osteosarcoma osteosarcoma osteosarcoma

I have been having periodic difficulties updating this site. If you do not see a recent update please check greendrakkoman.wordpress.com

On November 7th there will be a Community Work Day at Double H Ranch in Lake Luzerne. We would like to put together a work party to help out. If you are available please fill out and fax them the form at the link below and send us an email. Please write "Friend of Ben Stowell" some where on the form before faxing it.  

http://www.doublehranch.org/documents/upload/CommunityWorkDayForm_000.pdf     

Green Drakkoman Store - http://www.cafepress.com/greendrakkoman/ 

Ben's Photo Albums - http://picasaweb.google.com/greendrakkoman

Trip to Boston Album - http://picasaweb.google.com/greendrakkoman/Boston#/

  Twitter Account   http://www.twitter.com/greendrakkoman 

10/12/2009

10/5/2009

  On Friday evening Ben and James went to Webelos scout meeting at a friends house. I dropped them off and then left to go out to eat with a group of adult family and friends. Stacey and I had a great time. We knew that the boys were in very good hands and that one of the dads would bring them home. As expected the boys had a great time. They told us about the evening when we arrived home and put them to bed. They had managed to convince their grandmothers to let them stay up until we came home.
    
   Saturday morning we had difficulty waking Ben. He hadn’t produced much urine overnight. Hen we finally got him to wake up he complained of a headache and he whined, “I just want to go to sleep.” over and over again. It was the same all day and he was less and less responsive as the day went on. It was very scary. At one point Stacey, Miss Kathy and California Cousin Betty were sitting on the floor of his room just watching him trying not to cry as DoeDoe and GrammaMac sat downstairs worrying like crazy while acting very brave. I focused on James and reached out to the doctors. He had not eaten since Friday dinner time. We were asked what we should do about the Harvest Festival on Sunday. I replied, “The show goes on.” The doctors suggested that we make a change to the drugs Ben was receiving and increase his fluids dramatically. The doctors also gently reminded me that these changes could help him, but, that what we were seeing could also be the progression of the osteosarcoma. We know too many families who are on the same journey we are on so we know too well what Ben may be facing. We made the adjustments to the treatments and waited and prayed and waited. Saturday night we started to see improvement. He actually ate a little yogurt. During the overnight he started to pee a little more. On Sunday morning he ate some more yogurt and we saw a little more improvement. By the start of the Harvest Festival at 1 pm on Sunday he was back. He was weak and tired, but, he was acting like himself again. Ben is like a rubber ball that bounces back. He is weaker than he was last week at this time, but, he had a great time at the Harvest Festival. He came out and we pushed him around in his wheelchair. He loved seeing everyone and managed to draw some strength from their support. It was an afternoon that I don’t think the folks that were there will forget. I know I will remember it. The weather looked threatening up until a little while before it was to start. By 1 o’clock the sky was a beautiful blue and stayed that way until it was time to chase the folks away just before 4.
           
   There were stations to decorate pumpkins, do science experiments, face painting, spin art, cotton candy, a bouncy bounce and one for people to write wishes to Ben and our family. A company even donated port-o-potties for the event. Many of the kids were wearing their costumes as they ran from place to place and had a great time. We launch a water rocket several times. There was a professional karaoke DJ who played throughout the afternoon. The Siena College water polo team was there to do whatever was asked of them. Mostly they entertained everyone with their singing. One of the boys’ friends had his father bring a pumpkin that required a hand truck to be delivered so he could carve it for Ben. Towards the end of the event the Latham Fire Department showed up with one of their trucks. People were surrounding Ben with love and good wishes. His classmates were very well represented. One of the highlights was that the boys favorite radio personalities, the Morning Rush, from FLY 92.3 showed up to see Ben and wish him well.
At one point the crowd was getting a little overwhelming for Ben so he asked the woman who was his 2nd grade teacher to take him to see her new car. Miss Hock explained to him that her car was up and around the corner so they would be leaving the festival. E looked up her and said, “I know, I really want to see your new car.” She looked at me and I said to her, “If that’s what he wants to do and it’s okay with you go ahead. You love him as much as we do.” I watched as she pushed him up the street and away from the hubbub. She leaned down as she pushed the wheelchair so she could talk with him. I knew he just needed a break and she was the perfect person to be alone with. Ben stayed outside for close to 3 hours on Sunday. On Saturday at one point we didn’t know if he would even be aware of the festival. I told the crowd that we are so blessed to have all of the support that we have received. There are so many amazing people who have carried us and continue to carry us. Every little or big thing you have done keeps us going. On Saturday when I sent out the twitter messages about what was going on with Ben we know the heavens were bombarded with prayers and what a celebration Sunday turned out to be. Thank you all. 
 

10/3/2009

  I have a backlog of stories to put on here and they will show up. Today was going to be my day to catch up. We have all been looking forward to the Harvest Festival tomorrow. Everyone decided to keep this one a little more low key than the Lemonade Stand so there hasn't been much publicity. It is going to be a great time with all kinds of things happening. If you are in the area you should stop by for the festival taking place on the street in front of our house.

  Ben is sleeping. He woke up this morning with a headache and was afraid the cancer had moved to his brain. We explained that we didn't think it had and gave him his meds. He cuddled with his mom for a while and went back to sleep. He has woken up a couple of times and tells us he just wants to sleep. He has had very little urine output since last night. He tells us he is not in pain. We have medication available to us if he is. We are hoping that this is a just a setback, but, we are really in the land of the unknown and are thankful that he is comfortable.

9/18/2009

 I am working on a larger update of the wonderful things that have been going on during the past week. I will hopefully be posting later on tonight. I have been having difficulty updating this site mostly because of technical issues. Here is a smaller update.

  Although I have been definitely showing the signs of the stresses of the past 3 years lately everyone else is doing remarkably well. Ben is receiving fluids during the night and sleeps most of the night with an oxygen tube in his nostrils. He usually pulls it out in his sleep at some point during the night. He also receives oxygen during the day as needed. We periodically check his pulse and oxygen levels with a pulse-ox machine. He terrified Gramma Mac the other day when he decided to see how high he could get his pulse to go. He was sitting in the chair and through altering his breathing patterns rapidly, laughing and wigling around in the chair he was able to get his pulse to 144. The machine started alarming and I put my foot down nd told him to "Knock it off." He replied with a chucle. "What, I was just trying to get a little exercise and test the machine?" I told whim that what he was really testing was his granmother. We have noticed that over the past week he has needed to rest more and is sleeping longer. Stairs have become tough for him. He needs to take them slow and sometimes needs his inhaler and oxygen after climbing them. He remains as happy as ever and we continue to stay positive.

  Ben will be judging the bandaoke contest this week at Savannah's in Albany. It starts at 8 pm and we are planning on arriving around 7:30. If Ben is up for it he may sing "Gives You Hell" again to start off the show.

  I have a requests for help to make of you. We really want to get the Green Drakkoman Foundation up and running. We need to find an attorney and/or accountant that is familiar with setting up 501(c)3 corporations to assist us. If you volunteered in the past please forgive me for not following through with you. We already have a couple projects to start working on. If you can help us please email me at greendrakkoman@hotmail.com

9/11/2009

I brought Ben to school today. Yesterday he insisted that he was going to walk to his classroom completely under his own power. I found myself 6 feet behind him pushing his wheelchair. I watched as he walked to the building and through the halls. Kids and adults greeted him with big smiles. I am sure I was beaming with pride. As he walked I could see his stride changing slightly and knew he was tiring. At the halfway point through the building I asked him if he want to ride the rest of the way and he simply said, “No, I am going to do this.” As we passed his 3rd grade classroom his teacher from last year took a moment to step away from her new charges and greet him. The little encouragement she gave him carried him down the hallway to his 4th grade classroom. His classmates are amazing. They greet him with such pleasure, but, it is not over the top. It is hard to describe. He doesn’t want to be special and singled out, but, at the same time he gets strength from his social interactions. These kids surround him with what I have decided to call loving normalcy. James is a different matter and I fear he gets a little lost in his brother’s shadow. There are a few kids who are definitely really there for him and we are very grateful. James rushes to the bus to ride with his friends. We think that choosing his own path to school is a great sign and very healthy for him. The boys absolutely love school and this year should be a good one. Last night I was asking them how everything was going and how they expected the year was going to go. Their friend Danny was over at the house. Danny and Ben are in the same class and they both really like their teacher and said that they thought it was going to be a good year. I turned to James and asked him about his teacher, “So, is Mrs Dorsett working out?” He turned to me and matter of factly replied, “She doesn’t have to.”

People are very concerned about our family as a whole and each of us individually. We are grateful for each and every one of you. It continues to be a long, scary journey that we are on and we know we are not alone. Life itself is often scary and we cannot let fear get in the way of living. After dropping Ben off and seeing James getting off the bus at school I stopped back home before heading to work. I glanced at the Times Union (newspaper) and a headline literally made my knees buckle and heart sink. An 8 year old beautiful, healthy girl passed away the night before her first day of the school year. She had a severe headache and was crying. Her parents called 911. One minute their child was crying and the next she was gone. I cannot fathom the depth of their grief. We do not know what is in store for Benjamin or any of us. There are no promises. Discontinuing Ben’s chemotherapy is not accepting an end to his journey…it is accepting that we no longer have a map and compass to guide us through the woods. We have plenty of food, water and good shelter so we may as well enjoy the journey and the wonderful views. We are not alone and there is always a chance that we may find another map and compass or that a search party will find us. It is most important that we do not panic or let fear paralyze us.

9/10/2009

  I think last night may have been the best night ever. The event at Savannah’s was put together in less than 24 hours. During Ben’s last surgery we had been talking in a group about Ben and I made a comment that he loved the All American Rejects and had heard on FLY 92.3 about an event called Bandaoke at Savannah’s in downtown Albany and wanted to give it a try. I think I even said something about looking into it and never getting around to seeing if kids could go. Our good friend Julie was there and said she knew who the owners were and would reach out to them. The other day she mentioned that one of the owners had called back and thought they could make something happen. On Tuesday around lunchtime she called me and said that she was going to a meeting at 2:30 to discuss it and that Savannah’s, FLY 92.3, and the Ruddy’s (The best House Band Ever) were on board and that she would call with the details. Last night it all came together in a wonderful evening of celebration and tomfoolery.

We arrived a little after 5 PM and the band was getting ready to play for a while to warm up the crowd. Ben and James were both wearing “cool” clothes and the crowd was abuzz and waiting for the boys like they were rock stars. Ben was feeling really good and had more energy than we have seen in him since the surgery. He had spent the previous 4 hours receiving a blood transfusion. I’m not sure whose blood it was, but, it must have been someone very energetic and entertaining. Brian and Crissy from the FLY Morning Rush were the host for the evening and they were wonderful. They are both huge Yankees fans and I don’t think they have ever showered more love and attention on a Red Sox fan before. I heard this morning that they actually had an opportunity to be at the Yankees game last night in NY. Savannah’s hosted the event with open arms. I kind of wish we had arranged for designated drivers, but, it is probably a good thing we didn’t. The crowd was a very eclectic group of folks with great energy. After The Ruddy’s did their opening set they took Ben, James and the boys’ friend Duncan behind the stage to practice the All American Rejects song “Give You Hell” on last time. The Bandaoke set started with Ben and The Boys and the night would end with them almost 2 hours later. Jess Ruddy introduced Ben and The Boys by saying that the reason they picked this song was because it gave them permission to say “Hell” at least 50 times. They were fantastic. We are working on getting a video up on YouTube. The night continued with performances that were all full of joy and spontaneity. It was all about and for Ben. My favorite acts to see were Ms. Hock and Ms. Satterlee showing the adults in the crowd that there was no shame in performing for Ben and the extremely welcoming crowd. A group of the Siena Water Polo team sang a love song to Ben that was great. For me the show stopper was when a group made up of some of the important women in Ben’s life stepped on the stage and sang “I Will Survive” at the top of their lungs with an energy that was so strong it could have powered the lights. I think the group consisted of California Cousin Betty, Aunt Janine, Ms Satterlee, Becky (1 of his nurses), Stacey, Ms Hock, Miss Kathy and Dr Jennifer Pearce. Dr DeCaprio’s daughters sang a beautiful song with Crissy from FLY 92. I could go on and on. Throughout the evening Ben, James and Duncan sat near the stage and Ben munched on assorted menu items that our friend Donny kept getting for him. Ben smile so much all night that he was beaming brighter than the stage lights. James and I sang Michael Jackson’s “Billie Jean.” It was a blast to be on stage with him. Of course I wasn’t listening to me sing. If you missed the night and really want to get a taste of “Ben”daoke you will get a chance next week. Ben will be back at Savannah’s with the FLY 92 crew as a judge for their bandaoke contest next Thursday 9/17. They are planning on doing some fundraising things that night. It will be a later night though. I will put more details on the site as they develop.

Today James took the bus to school. We brought Ben and when we arrived at the school he insisted on walking. He said, “I am not riding in the wheelchair on the first day of school. I AM walking into the building.” He did just that. He made it to the classroom, but, when he arrived there he was tired and very glad to find his desk. Mr Gubitz (sp?) was there to greet him and the other kids as they came in. His classmates were thrilled to see him. Stacey brought the oxygen tank to the nurse’s office in case he needed it. Ben and James are officially 4th Graders. The summer is over. Ben is in school and everything feels a little bit better. He was only there for ½ day because Stacey needed to take him to the hospital for more blood products and blood work. He spent the afternoon getting platelets.

9/8/2009

  Yesterday was a pretty amazing day. I am not sure how many people sacrificed their Labor Day to come to our house and clean, redecorate, pick up, hang shelves, clean carpets, build things and work in the yard. I ended up taking the boys to Firefighter Tony’s house with Mr and Miss Kathy. The chemicals and activity were a little overwhelming for Ben and very overwhelming for me. We had a great time checking out Tony’s new place, eating donuts and chatting with the Crudo’s. After we were there for a while we headed out to Crossgates Mall for some school shopping. James decided he didn’t want to go so we dropped him off with Stacey. It ended up being Miss Kathy, Ben, Miss Kathy’s daughter Steph and her friend. Steph’s friend brought along one of the cutest 2 ½ year olds I have seen in a while. Her daughter is beautiful, funny and at times a handful as only an active wonderful toddler can be. It was really fun to be with them for part of the day. Miss Kathy and I took Ben to pick out a new going to school ball cap. It’s not like we don’t have a ton of baseball caps. Ben wanted a new special one and boy did he get a bright hat. I’ll get a picture on here because I can’t describe it. After that we met up with the others and went for a bite to eat at Johnny Rockets. Ben was actually hungry so we jumped at the chance to feed him. Unfortunately it took forever to get a table and to get our food. I think he lost his appetite a little he ate anyway. After that we all headed to a store to pick up some “cool” clothes. He saw some pants and shirts he thought were neat when we were walking through the mall. After that we were going to head to a shoe store to get new sneakers for him. As we arrived at the store he hit a wall. His coloring got bad and he asked for his inhaler. He usually doesn’t ask. He described the feeling as tightness in the chest and difficult to breathe. He asked me to get him “out of there.” We headed to the car in a quick and prudent manner. As we left the mall he got sick a little. When we arrived at the car we put him back on oxygen and he laid down. By the time we were home his coloring was good and the episode had passed. Luckily everyone had pretty much finished up so he could relax on the couch. 30 minutes after we were home it was as if he had never had difficulties. I think Kathy was a little upset, but, she held it together with the skill of a professional. Ben was a little disappointed that he didn’t get a chance to pick out his new sneakers. Steph had asked what color he wanted and what size he needed. He didn’t know I, but, she went looking through the shoe stores at the mall looking for sneakers with yellow on them. She found a beautiful pair of white and black Nike running shoes with bright yellow accents. They were absolutely perfect and when she showed up at the house with them his smile was amazing. She found the perfect pair. When I talked with her mom later she told me that Steph said, “Mom, when I was a little kid the most important thing to me about going back to school was my sneakers. How could I not? I knew how disappointed he was.” Thank you Steph and thank you every one. You continue to make our family feel like the Bailey’s.

9/4/2009

   We started this web site almost 3 years ago. My intention has always been to share our experiences in an open and honest way. Tonight as I write this I am focusing on the positive. I have tried to come up with a way to tell you all about the happenings this past week without scaring and upsetting you as you read it. I will start by saying that Ben is doing well. He is resting and saving up his strength. He has plans to go to school when it starts on Septemeber 10th. He has plans to go snowboarding at Double H Ranch this winter. He has plans to have fun with his friends and family. Our goal is to help Ben accomplish as many of these things as possible.

  Ben was admitted to the hospital earlier this week because of the fluid that was in the area around his lungs. As the fluid was treated as an infection it seemed to clear up some and his breathing improved. In an effort to hasten the healing it was decided to use a radio-intervention technique that involved using ultrasound to identify the pockets of fluid and then use tools to drain the pockets. When the technician did the ultrasound on Wednesday it didn't look the way she expected it to look. She reached out to the doctor who was going to do the procedure. He also was confused by what he was seeing and since he was a "fellow" he brought in the Cheif doctor in that department. He also didn't like what he was seeing. He reached out to Dr Pearce to see what she wanted to do. He recommended a CT scan to get a better idea of what they were looking at. The whole time Stacey and I were involved in the discussion as we were with Ben in the procedure room. Dr Havier Sanchez was also with us. He is the head of PICU and he was there to help us. He made sure that we understood everything and was technically the doctor who ordered the procedure. He has turned up in several scenarios throughout these 3 years and in each one he was on Ben's side and looking out for Ben's best interests. He did the same in that room. It could have been terrifying for us, but, he helped us hold it together and protected Ben by guiding the conversation. The doctors were all great and asked Ben if he had any questions. The CT scan was ordered and Ben was moved to the CT suite for imaging. While we were waiting Dr Sanchez and one of the assistants were in the room with us. Ben started singing, "20, 20, 24 hours to go-o-o-o. I want to be sedated." I thought they were going to explode with laughter.  commented they must have heard others under sedation sing the song. The assistant replied, "Never from a 9 year old." After the CT scan it was decided that the fluid was loculated. Loculated means that it is in many small pockets. After discussing it with Dr Pearce and the surgeons Dr Whyte and Dr Georges it wasdecided that they would go in yesterday and remove the liquid using as small an incision or incisions as possible - kind of a mini-thorocotomy. It took a while and then they came out to talk with us. It seems they didn't find very much fluid.  When they opened Ben's right lung cavity  they found that his rght lungs were mostly filled with tumors. The tumors where not distinct on the images because of scar tissue. There are too many to remove and they are making it nearly impossible for Ben to use his right lungs. Ben is breathing well, but, only with his left lungs. 

  It is apparent that a chemotherapy which initially showed promise has once again not been able to control the evil alien within Ben's lungs. After consulting multiple doctors who we trust implicitly we have decided to discontinue the chemotherapy. It is not benefiting Ben and the side effects negatively impact his ability to live life to the fullest possible measure. We are continuing to give him medicines which lessen the impact of the osteosarcoma symptoms and control pain. As he recovers from the incision pain he will become more active. We are also keeping him on oxygen as needed and giving him fluids at night to keep him hydrated. We are also planning to have as much fun as possible with him and help him to acheive his plans and goals for the near future. As James said when this whole mess started, "Ben is still Ben and he always will be."

  We have no idea what is around the bend of this road we are on. We do know that we are not alone. We do know that although at times the landscape seems barren there are many waypoints along the way. We do know that when we fall there will be someone to help pick us up. I did not think that the words I put on here the other day would come back at me. I find my self focusing on this quote from my last post - The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both may lead to the same destination. The road we are on continues to be paved with hope. I and many others are looking for a map, compass or star that will point the way. There could still be one around the next corner or hidden in a nearby bush. We love all of you and ask that you continue to remember that "Ben is still Ben."

  I also wanted to mention Mocha. As you know Ben has wanted Mocha to become a therapy dog. Ben and I have worked with her and she passed the therapy dog test a couple of weeks ago. I went to the Volunteer Department at Albany Med this week to take the necessary steps to have Mocha be able to work with Ben and I there as a therapy dog. The woman in charge took my paperwork and thanked me saying, "Great, we will review everything and invite you for an interview. We have a number of dogs ahead of you and ther person who conducts the interview is on vacation. It may take up to 6 weeks before the interview. I was crushed. Tears welled up in my eyes and my kneees wobbled a little. I told her of Ben's wish to see Mocha help others. She said she would see what she could do and because Mocha is a registered therapy dog made arrangements with the child life specialists and security for me to be able to bring Mocha into the hospital to be with Ben if he is inpatient. I thanked her. A little while later she caught me by an elevator and said, "Oh good, I found you. Here you need to come with me. I made a few calls and someone must be helping out somewhere. Everyone I called wants to help." She walked me through things and in 2 hours I had filled out tons of paperwork, given blood to be tested and recieved a flu shot. These amazing people at the hospital have made it possible so that on Tuesday when Ben goes to clinic he will get to see his dog Mocha do her first rounds at Albany Med as a therapy dog. Everything was done legitimately, just quickly.

9/1/2009

  Ben has been keeping a relatively low profile these days. Interferon is a really tough chemo and that coupled with this cold virus he is fighting are knocking him for a loop. All of the health care professionals we have talked with assure us that the breathing issues are related to the virus not his osteosarcoma. I asked him last night to describe how he was feeling and the best word we came up with was “Blllllllllllllllleeuuuuuuuuuuukkkkkkkk!!” I think I spelled it correctly. We have been feeding him mild chicken wings from Paesan’s in Latham every night this week. Last night was the first time he decided he wasn’t hungry after I brought them home. One of the things I have discovered is that if he is hungry for something there is a very short window to provide it or he loses his appetite by the time you get it to him. Climbing up or down stairs or walking very far winds him easily and tires him out. He is also a little cranky at times. Ben cranky can be very funny. He is the most polite cranky person I have ever seen.

      
  Today when Ben went in for Chemo they did an x-ray to see what is going on with his lungs and breathing. It seems that there is fluid building up around his lungs. The fluid isn’t in his lungs so it isn’t pneumonia. The fluid around his lungs is what is making it hard to breath for him. Ben has been admitted to the hospital and is already in a room – 726. It’s a private room and one of our favorites. Doesn’t that stink; being able to actually have a favorite hospital room. Dr Georges will be coming in to see Ben and do an evaluation. Ben will most likely be having surgery to put in a chest tube to drain the fluid. They will most likely culture the fluid to try to find out more about it. Ben knows that we have to do something to get the fluid out. We don’t know the timing of the surgery, but, I will use twitter to post it here on the web site. Ben is scared. We are focusing on the positive and looking to keep him motivated. We are very happy that California Cousin Betty asked to take James with her to Glens Falls this week. We spoke to James last night and he is doing well and having a good time. Although, the baby that is there is crying a great deal and he has had enough of that.

         
   As most of you know we follow an email list on ACOR.org for patients, caregivers, medical professionals and anyone with an interest in osteosarcoma treatments and car. We are in touch with folks all over the world. It is a great sounding board for things. Lately it seems that a number of folks on the list have been having a tough time. One of the Moms posted a story of being told to give up hope that almost broke my heart. She and her child are real fighters and she turned to the list for reinforcements. Here is the email I sent to the list in support of them:

          
I cannot reach across the distant miles and hug any of you with my arms. I
remember when we found this list almost 3 years ago I only expected to lurk
for a few months or maybe a year. I fear for the people coming onto this
list that they may not be able to see the light through their fear. 3 years
ago there was very little new being done to combat osteosarcoma. Thanks to
some of the folks on this list and many others today there is a great deal being
done to combat osteosarcoma. It may seem that many of us are struggling
right now to find something that works. The positive thing to focus on is
that we are doing just that. We are able to find options. We are able to
keep moving. We are able to share another year, month, day or even hour with
our loved ones. We are able to smile, laugh and even cry. We are able to be
there for someone else and we are able to allow someone else to be there for
us. Stay strong, be positive and no matter what there is always hope; if not
for ourselves for someone else.
         
When I was a young man I was asked to give the sermon during a Youth Sunday.
At the very beginning of the service I had pencils and paper handed out to
the congregation. Once everyone had their paper ready I asked them to quiet
their hearts and mind and just listen to my voice. I explained that I was
going to say a single word and that I wanted them to write down the first
thought that they had regarding the word. If it was a quote or bible passage
that included the word that would be fine. If it was a definition or
impression of the word that would be fine. There were no wrong answers. What
was important is that they write something. I then said a brief prayer
thanking god for everyone's presence and wisdom. After ending the prayer I
said the word "Hope." After a little while we collected the papers. The
sermon consisted entirely of me reading what the congregation had written.
It was incredibly moving. Since that time I have actually done the exercise
on my own using different words and the internet, the bible (with a
concordance), the library card catalog and books of quotes and wisdom I have
acquired. Here are some of my favorite sayings about hope for today. I have
added the sources where I know them and they may not be 100% accurate.
            
- Where there is breath there is hope. ~ Me - I think
- Hope is the name of the knot I tie when I am at the end of my rope. ~ Me too
- The Grand essentials of happiness are: something to do, something to love,
and something to hope for. ~ Allan Chalmers
- Hope is both the earliest and the most indispensable virtue inherent in the
state of being alive. If life is to be sustained hope must remain, even
where confidence is wounded, trust impaired. ~ Erik Erikson
- Hope is like a road in the country; there was never a road, but when many
people walk on it, the road comes into existence. ~Lin Yutang
- The road that is built in hope is more pleasant to the traveler than the
road built in despair, even though they both may lead to the same
destination. ~ Marion Bradley
- I still believe in Hope - mostly because there's no such place as Fingers
Crossed, Arkansas. ~ Molly Ivers
- When you say a situation or a person is hopeless, you're slamming the door
in the face of God. ~Charles L. Allen
- Hope never abandons you, you abandon it. ~George Weinberg
- Some see a hopeless end, while others see an endless hope. ~Author Unknown
- Hope is patience with the lamp lit. ~Tertullian
- Hope is the word which God has written on the brow of every man. ~Victor
Hugo
- Hope is the only bee that makes honey without flowers. ~Robert Ingersoll
- Lord save us all from... a hope tree that has lost the faculty of putting
out blossoms. ~Mark Twain
            
Love you guys

8/30/2009

  The other day Ben and James had an opportunity to see something that very few folks get to see. They both love planes and helicopters. We have had some small remote controlled planes that they have played with. We even flew one of the helicopters around the hospital during Ben’ stays when he was getting chemotherapy as an inpatient. The boys were able to go to the NY State Police Aviation facility at Albany Airport. The officers heard about Ben through a friend and invited Miss Kathy to bring the boys to the facility. The State Police have a number of vehicles and the boys had the opportunity to look at most of them and even see the insides of a couple of them. They also had the opportunity to see the inside of a SWAT Team transporter. One of the officers showed them one of their machine guns/rifles. They couldn’t touch it, but, he let them look closely at it. It was an incredible special time that the boys will never, ever forget. They have been talking about it almost non-stop. As they toured the facility one officer gave Ben a Boston Red Sox helicopter right off of his desk. Another handed the boys a football. They also received a State Police Aviation baseball cap right off of one of the officer’s heads. One of the things the boys are most proud of is that they have the business card of a member of the SWAT team, “In case they ever need it.” I don’t like to think why they would need to call him, but, they view it as having their own personal SWAT team member. It may not have been a great deal of time to an adult, but, to two 9 year old boys it was something that they will always remember.

Last night, for the first time in a while, Ben seemed to sleep a little better. California Cousin Betty was with us for the night. The two of them slept in Gramma Mac’s room and CCB thought he slept well. Ben has been fighting a virus that is putting additional stresses on his lungs. He has a runny nose that is putting gunk into his lungs. At night he is coughing quite a bit so I don’t think he is sleeping too well. He doesn’t complain about it. We have been giving him Sudafed to help with the runny nose and it seems to be working. He is supposed to get chemotherapy tomorrow and we are hoping that his counts are good enough for him to get it. He gets quite the cocktail He will be getting the interferon and etoposide along with the zolydronic acid. He will be there most of the day.

On Friday we stayed the night with our friends David and Pamela who live in Bolton. There house is beautiful and has a great view of Lake George overlooking the Sagamore and many islands. They are wonderful hosts and do everything they can to not only make us feel at home, but, the boys too. When we were leaving the house on Saturday James said, “I think they would let us live with them.” We chuckled a bit and then he added, “The only problem is there may not be enough space for our toys.” When we left we went with David and Pamela to the Ben & Jerry’s in Bolton. You see, they own the store. They let the boys scoop their own ice cream. As all of us sat down to eat our ice cream James turned to David and said, “Ben & Jerry’s ice cream is great, but, it’s even better when it is free.” David pointed out, “It usually is free for you. Your parents pay for it.” We had a great time although the weather didn’t cooperate so weren’t able to go out on Lake George in their boat. Depending on Ben’s chemo we are planning on heading up later this week. At least Stacey and the boys are planning on it. My attendance will depend on work.

8/25/2009

  Tuesday night was a pretty cool night. We brought Mocha to her first therapy dog working session with children. Previously she had been working at a nursing home in Troy. She is really good with the older folks, but, she was amazing with the kids. They couldn’t keep their hands off of her and she just relaxed and let them. It has been really been an eye opening experience. Even though I am her handler I was very skeptical of the whole therapy dog thing. I had watched Ben’s reaction when the dogs came around at the hospital. Most of the time he barely talked to the dogs that were brought in and would rarely pet them. He always smiled and he always welcomed them into his room. I talked to him a little about it and he said that when they came in sometimes it made him miss Mocha, but, it always made him feel a little better. I have watched as one older woman who could barely remember her name spent 10 minutes petting Mocha and talking about the dogs that she had throughout her life. I listened to gentleman laying in bed unable to sit up tell me about the chocolate lab he had after he came back from a war (I’m not sure what one) as he rested his hand on Mocha’s head and she let him. There was one nicely dressed lady who was strapped into a wheel chair in the hallway and she was speaking incoherently. Mocha pulled me over to here and sat down on her own next to the wheelchair. We asked if she liked dogs and she looked at Mocha like a little girl discovering a pony. She reached forward and cupped Mochas face in her hands and said, “Mocha, that’s such a pretty name.” Mocha’s tail moved a mile a minute and the two of them looked at each other for a little while. She stroked Mocha’s head and said a few sentences about how nice, beautiful and good Mocha was. She looked up at me and thanked me for bringing Mocha to her. As we walked away I heard her go back to mumbling. Mocha had done everything, even selected the woman to sit next too. I had not given a single command. I stood there and held the leash. The woman who was training Mocha and I turned to me and said, “See, the dogs get it. Mocha just gave that woman everything she needed. Mocha is already a great therapy dog. You can’t train the love that was just in that interaction.” I am now a believer and very grateful that Ben believed that Mocha would be great. I was also surprised at just how much the dogs at the hospital really benefitted him.

Master Keoshi (Russ) brought several of his students to Noogieland to do a karate demonstration and then a lesson for the kids. It was really nice and Ben was thrilled that he was coming. Ben has worked very hard with Master Keoshi at the hospital. Ben was singled out a few tmes to demonstrate different moves. One of the black belt students was holding the bag when it was Ben’s turn to kick. He surprised her and did 2 really hard great kicks that moved her backwards. Master Keoshi was watching a said, “You didn’t think he could kick that hard. Trust me; you have to be ready for him.” Ben did great. He takes karate very seriously and works hard during the lessons. He has asked us to get him a heavy bag to practice on. I think this is the week to make that happen. At the end of the lesson Master Keoshi surprised everyone. He brought Ben up and told of the hard work Ben has done over the past 2 years. Ben pointed out that it was really 2 ½ year…”Almost 3.” He spoke of meeting him and calling him his best student at the hospital. Ben was a little embarrassed, but, he enjoyed the notoriety. Master Keoshi then had Ben turn to him and with the two of them facing each other. He told Ben that during his last lesson at the hospital Master Keoshi was actually testing him. Upon review he was presenting Ben with his next belt. He removed Ben’s blue belt and put the new blue belt with black stripe on Ben. Ben stood proudly erect throughout the surprise ceremony and then they bowed to each other. The black belt student congratulated Ben. Afterwards I went up to Master Keoshi and choked up as I thanked him. He gave me a very strong handshake and with a look of strength and love in his eyes said, “He earned it.”

8/24/2009

 Ben's platelet count was too low on Monday for him to receive his chemotherapy this week. He will be waiting until next Monday to start his 5 day cycle. Just before he left for Camp Adventure I noticed he had a spot on his right wrist that was a little tender. I didn't feel a bump and it wasn't really painful for him. After we wpicked him up from the Camp Adventure trip I touched the spot and he really flinched. It is quite painful for him. On Monday we had it x-rayed and the images didn't show anything that required intervention. The films are being reviewed further. Today the spot is stillpainful. On Thirsday he will be going back to the hospital to have his blood counts done. We may ask for additional images if it isn't getting any better. He has been coughing a great deal this week and it is concerning him. He asked his Mom why he keeps coughing. His nose is running and the coughing goes away when we give him Sudafed. That is what we are doing. When we were at the hospital he talked a little about the pain in his wrist. He was concerned that the osteosarcoma had moved to his wrist and is what is causing him to cough. He doesn't talk about his fears very often. I told him today that I was very proud of him. He asked why and I told him, "You are brave, courageous, smart, funny and caring. You have a great memory and never forget a bribe, which, I might add are usually very creative. Did I mention good looking and talented, just, like your Dad?" After the chemotherapy next week we will be getting images, scans, blood tests and as much information as possible to see how he is doing with this latest treatment. e are planning on going to MD Anderson Cancer Center in Houston, Tx to see some of the leading osteosarcoma experts in person for another opinion on what we should be doing. Dr Pearce agrees that this is a good thing to be doing. She pointed out that our insurance will most likely not cover this visit at this point in Ben's treatment. Everytime Ben coughs a part of me screams. I know that if I am worrying what is he thinking. He trys to protect Stacey and I from things that make us cry. We hear so many stories from parents about their children protecting them and now we are really seeing it from Ben. I think we are all looking forward to school starting. Ben draws an incredible amount of strength from the Blue Creek School and community. We were supposed to go to the Red Sox game on Monday and instead decided that we needed to take it easy and not push ourselves. The boys had a great time at Noogieland tonight. The folks at Gilda's Club allowed us to bring Mocha in to be with the kids. She did an amazing job. She really is going to be a great therapy dog. She allowed the kids to pet her and just oozed love towards them. One very little girl just sat next to her and gently played with her ears. At one point the girl wanted to see how soft the hair on the inside of Macha's ears was and leaned really close and gently brushed Mocha's ear agains her cheek. Mocha just lay very still and let this little girl check her out. I am very glad that Ben insisted that Mocha become a therapy dog and I am very happy that the boys are so proud of her.

We are stayiong strong and staying positive. he summer is almost over and school wil be starting on September 10th. Another summer of fun and memories is coming to a close.

8/20/2009

  We are heading to Hofstra tomorrow to pick up the boys. We have called twice since Ben returned to camp to see how everything was going. The boys have been having a fantastic time. Obviously they have made themselves known to the camp staff and administration. We have not actually talked to the boys. The kitchen staff has been going above and beyond to keep en eating. They have been making all of his favorites to keep eating whether or not it was actually on the menu. The boys are definitely looking out for each other. e heard that James went up to the kitchen staff and asked for another grilled cheese sandwich for Ben. A member of the staff pointed out that Ben had just received one and was in fact eating it at that moment. James replied to her, "I know, but, he should really eat another one to keep up his strength." She laughed and made another one. Ben has not used his wheelchair since returning to Camo Adventure from the hospital. They have also asked him if he wanted to ride on the golf carts between events and he hasn't really taken them up on the offer very often. The boys have been touching base with each other as they move between parts of the camp. Sometimes they are together for things and other times they go their seperate ways. Benn has also been making sure that James is comfortable at night. Last night they had the camp prom. The camp arranged for ball gowns for the girls and tuxedoes for the boys. They also had 8 limos that picked up the kids and drove them around the camp before depositing them at the hall where the dance was taking place. The woman that Stacey spoke with said the boys were adorable. After the prom the kids were given treats, trinkets and stuff. James was having a difficult time carrying it all and holding up his pants at the same time. His tuxedo pants were a little large for him. He asked the woman walking with him to either help him carry the stuff or hold his pants up. She volunteered to carry his treasures. We can't wait to see the pictures and hear the stories.

8/16/2009

  On Friday night we all went to a gala fundraiser for the Double H Ranch that was held at The Great Escape in Lake George. As part of the fundraiser Ben and I spoke to the attendees. We started with me interviewing Ben and asking questions about Double H Ranch. After that he left the stage and I stepped up to the podium. I explained to the attendees how important Double H has been to all of us. During the speech I told everyone that when everything started Stacey and I promised Ben he would never be alone in the hospital. One of us would always be there or at least a relative or close friend and then it would only be for short time. I said, "and we have managed to keep that promise." Yesterday we brought Ben and James to Hofstra niversity on Long Island to meet the busses to take them to the American Cancer Society's Camp Adventure on Shelter Island. They were very excited and couldn't wait for the bus to take off. We were a little nervous about sending them off on their own. They were very cute. Ben told us that if James was scared and needed cuddling he would cuddle with him. James told me he would keep an eye on Ben for us. Around 1 pm I received a call on my cell phone from the lead Doctor at the Camp. They had been trying to reach us and where very relieved to have me answer the phone. Last night our power went off here and apparently our telephone wasn't working. Stacey's cell phone had dead battery. The doctor explained to me that Ben had a niose bleed and it wasn't stopping. It had been bleeding for almost 2 hours. They had called Ben docotrs here and they told them to bring Ben to hospital and get CBC (blood count) performed if it continued to bleed for more than an hour. They were on the way to the hospital. They had to take a ferry from Shelter Island to a hospital on Long Island. He was travelling with a nurse from the camp and the camp director. We talked to Ben a couple of times and the women with him. We know he is in good hands, but, today our promise was broken. It turns out that Ben's platelet count is up to 20 from 8 on Friday. His white blood count is low, but, he hasn't had a fever. They are heading back to the camp now. When we told Joe, our neighbor, about Ben he asked how we were able to stay so calm. He said, "You guys are rocks." I replied, "We may look like we are on the outside, but, inside we were both wrecks." Even though I have talked to Ben twice and he sounds fine I can't help feeling I have let him down. When he talked to Stacey a couple of minutes ago he asked her to send Caymus to him. He had decided he didn't want to take Caymus to camp because he was afraid something would happen to him. Not only did my little boy spend the day in hospital without his parents he didn't have his favorite stuffed animal that has been by his side throughout the treatments. We are going to see about getting it to him. All is well and we know they are having fun. Boy do we miss them.

8/12/2009

Today we were expecting Ben to get transfusions of red blood and platelets. Stacey packed him up and headed to the hospital. I called around 11 to see how it was going. She told me they were home and that his counts had rebounded since Monday. They are still low, but, close to what is considered normal. He is taking it a little easy. He is eating a little better. We are half force feeding him and half giving him whatever he wants. The other day I was at the market and reading the packages of the food I was buying to see which items had the MOST calories. As I was doing that in front of a frozen food freezer looking at the calories on ice cream sandwiches I noticed a woman about 20’ away doing the same thing. I couldn’t help smiling and wondering how many people were looking for high calorie items. I ended up buying both packages of ice cream sandwiches. The 1 with 250 calories per ice cream sandwich was for Ben. The 1 with 150 calories per ice cream sandwich was for the rest of the household.

When everyone, except me, was at Giants training camp something really cool happened. After Eli Manning came over a woman standing outside the fence called Patricia Olsen over and asked if that was Ben Stowell in the wheelchair. Patricia replied that it was and the woman introduced herself to Stacey and the boys. It turned out to be Lin Burgess. As you know there are many people on the same path that we are. Lin’s 17 year old son had osteosarcoma in his femur. It was removed and he was declared NED. Like Ben, he had several months of feeling the monster had been vanquished. Unfortunately, like Ben the osteosarcoma has metastasized to his lungs. We have been following Nathan’s journey for some time now and it was really nice to get to meet her in person. She had come all the way from Seattle and was in town visiting her family. She grew up around here. She and Nathan have an apartment in Seattle near the children’s hospital where he is getting his treatments. The 2 of them moved there from Alaska; leaving Dad back at the house to work, take care of the dog and commute to Seattle every time he is able to. Her father is a huge Giants fan and wanted to go to the training camp. They had decided to go to the camp and then she received a tweet on her cell phone. It was my twitter message saying that Ben and the rest were heading to the Giants training camp. She knew then that there was no way they weren’t going to see the Giants…and Ben. Stacey and Lin decided that we would get together before she headed back to be with Nathan in Seattle today.

Last night we made arrangements for the boys to get to and from Noogieland without us. We invited Lin and her family here in Albany out to dinner at one of our favorite restaurants – Creo. Stacey an I pulled into the parking lot at Stuyvesant Plaza right at 6:30. We were exactly on time. As I pulled up to the doors at Creo to let Stacey out before parking the car we saw a familiar face coming out of the restaurant . It was my sister Janine. On a whim she and a friend had decided to go to Creo for the evening. To make things even cooler she had been inside the vestibule talking to 2 women who were waiting for the rest of their party to arrive. As you have probably already guessed it was us they were waiting for. Lin and her sister had been talking with her. It was really cool. We invited Janine and her friend to eat with us, but, she refused. Lin’s father and mother showed up a little after we sat down. It was an amazing dinner. The food was fantastic. We talked about so many things. We talked about treatments. We talked about hope. We laughed. We had teary eyes a couple times. We laughed. Our bond was instant and we laughed at things that anyone over hearing us would think we were nuts. Stacey and I were so thrilled to get to meet someone we only knew from the ACOR osteosarcoma list serv and checking out each of our children’s web sites. We pray for Nathan and family everyday and I know that Lin and her family are doing the same for ours. I don’t think any of us wanted to say good-bye. There was a great deal of hugging. During the night Lin and I had talked about updating our child’s web sites. I had commented about how I had to stop writing for a bit. She told me that she understood. When we were leaving Lin gave me a great hug and as our embrace ended she looked at me and said, “You have to keep writing. You make it real.”

As we were driving home I had the top down and noticed it was 9:48. The night air was beautiful and the wind felt good blowing through our hair. We could even see stars in the sky. Stacey looked at me and said, “Isn’t it wonderful having a convertible on a night like tonight.” I agreed. The radio was off and I didn’t feel the need to turn it on. We talked for a bit. All of a sudden I realized that I was doing all of the talking. I looked over and Stacey was quietly crying. I reached over and put my hand on her leg. She knew I understood her tears. Her tears are not easily explained. They are tears that contain great joy and great sadness at the same time. There is no other way I can think to describe them.

8/10/2009

Be prepared for a long post today. A great deal has been going on this week. Ben started the Interferon/Etoposide therapy on Monday. He has tolerated it amazingly well. The doctors and nurses can’t believe he has handled it without any major side effects. We have talked to a couple people and read about it on the internet and the side effects can be very scary. Your prayers and kind thoughts continue to give him strength.

Mocha passed her therapy dog test on Wednesday. The person who conducted the test and evaluated Mocha has submitted the paperwork and we should be getting the IDs and other certification documents soon. It takes a little time to work through the official channels of the organization – Share-a-Pet. After we have everything from them we have to get paperwork completed through the Volunteer Office at Albany Medical so she can go into the hospital to visit patients. Ben is really looking forward to it. He can’t be her handler because he isn’t 18, but, he can go along with her. We can also bring her to school and to Noogieland. She really is good at it. The testing was done at a nursing home and she did everything well. I think I need more training then she does. We will still be receiving training to improve our skills. The subtleties of the work is very interesting. Teaching her to hold her head in just the right place so the patient can reach her, being able to back up out of a tight space and to not lick are the things we are working on. She does the first 2 very well. The hardest thing we have to teach her is not to lick.

Last night Ben was alone with his Mom in the boys’ bedroom. They were moving things around in the room and talking about some of the cool things and experiences that we have had over the last 3 years or so. The boys have always wanted bunk beds and we kept telling them they were too young. 9 years old is a fine age to get bunk beds. There was little discussion about who would be on the top bunk. They figured that out a long time ago. Ben is in the top bunk. The beds are up and everyone has been happy with them. So the boys are redecorating their room. The change is good and that is how Ben and Stacey ended up alone in the room moving his trinkets to his new set of shelves. James had already moved most of his things to his set of shelves. As they were doing it they reminisced. They ended up sitting together on the floor just talking. Ben said, “I’ve had cancer a really long time, haven’t I?” She replied, “Yes you have. You were 6 when we found it.” “So, I’ve had cancer for 3 years.” There was a pause and he added, “That’s a really long time when you are 9.””Yes it is Ben, but, we are doing everything we can to get it out of you.””I know. I am really getting tired of all of this. I really want it out of me. I want it to be over.” “We all do.””Mommy, why are you crying? Please don’t cry.””Oh Ben, I am just crying because of all of the memories that we have talked about. They mean a great deal to me and I am very sentimental. You know I cry at commercials.””I know, I just wanted to make sure they weren’t sad tears because of me.”She somehow choked back the tears and said, “No honey they are good tears. Because I am happy about everything, all of the memories we have been talking about.” It was at that point that I entered the room and everything stopped. It was very obvious that Stacey had been crying. I asked why Mommy was crying and Ben said, “Don’t tell Daddy what we were talking about.””She looked up at me and said, “Everything is okay. We were just talking about the things we have done together. You know me, sentimental, softy”. At that moment I knew that been was protecting me once again. He doesn’t like us to worry about him.

     
Today we all woke up early and then went back to sleep. We woke up again and quickly dressed. The boys were wearing their blue Eli Manning football jerseys. I had also picked up white ones and half sized, autograph footballs for the boys to get Eli’s autograph and maybe some of the other players. We were getting the chance to be in the bleachers 20 feet from the practice field with no fences between us and the players. I had to go to work so after we wheeled Ben to the bleachers I stayed a little while and then left. The air was very thick with moisture and a few clouds dropped rain here and there. At one point James asked with exasperation, “How long does this practice go on?” It was very warm and then the sun came out for a period of time before the rain sprinkled some more. Sitting in wheel chair Ben was visibly wilting. Patricia Olsen, the person who helped make the visit happen, went over to a lady who had an umbrella. Of course we hadn’t brought one. She asked the woman if she could borrow her umbrella for Ben. The woman told her that she was a cancer survivor and would be happy to let Ben use it. Patricia asked her if there was anything she wanted to get signed by Eli Manning. She gave Patricia a hat to have him sign. The Olsen’s have been an amazing part of our support. The entire family has reached out to us and their son Ben has become a great friend of the boys. As soon as practice ended a very tall, good looking man in a gray Giants t-shirt came walking towards Ben. It was only when one of the people with them said, “It’s Eli.” to her. At that point many people starting imploring Eli to come to them. Eli was totally focused on Ben. As he approached the wheelchair he reach out his hand and asked, “Are you Ben? I’ve been looking forward to meeting you.” Ben was stupefied. He couldn’t get a word out. Eli also turned to James and said, “You must be James.” The 3 of them talked for a while and posed for pictures. He asked the boys who were their favorite players. James replied, “You.” Ben said, “Well I do like the Giants and the Colts. The Giants and you are my favorite, but, my second favorite would have to be the Colts and Peyton Manning.” He said it with emphasis on Peyton. Eli looked at him and said, “I guess that’s okay – keep it all in the Manning family.” He talked with everyone and signed everything we and the Olsen’s had brought with us. He then turned and walked across the field to go back inside. He was truly there for Ben and James. I guess I am now a Giants fan and an Eli Manning fan too. At the same time I find myself looking at the fences holding people back and thinking about what it would be like to be on the other side of the fence – taking 2 very disappointed little boys home.

http://www.facebook.com/album.php?aid=96315&id=590332309&l=b9552e63e1

Ben is exhausted and is sleeping soundly after getting a platelet transfusion today. He will be having transfusions of blood and platelets on Wednesday and Friday. We will also be giving him a neulasta shot that should stimulate his blood production. He is losing weight. He is down to 82 pounds. We are trying to get him to eat anything. We are also putting butter on anything we can. Stacey stopped on the way home from the hospital to get him wings. He ate a few and then went to sleep.

8/5/2009

 We had a great time last night at the Valley Cats game at The Joe in East Greenbush. Ben was a real trooper and some nice parking attendants allowed us to park in the season ticket holders lot. It was close to the ballpark. We had a feast of hot dogs, hamburgers, soda and water. Ben really didn't eat anything. His appetite is practically non-existent. We are putting him on an appetite enhancer called Marinol. His energy level was not real great at the beginning of the game and continued to drop. James checked on him several times. He would lean forward and look over at Ben. I was sitting in the midle of them. I had my arm around Ben and he was resting his head on my arm and shoulder. Ben kept insisting that he wanted to stay. James whispered to me,' It's okay, we can leave." I told him that Ben wanted to stay at least until the 5th inning. James then said, "It's okay to blame it on me let's go." He then leaned forward and said to Ben, "Ben, come on, let's go home. I'm bored. You are too." We ended up leaving during the 4th inning. Ben is a real trooper and I could see the relief on his face when James and I insisted that we leave. Although he wouldn't admit that he was happy to be going home.

  He had his chemotherapy today and is tolerating it well. He hasn't had any more fevers. His energy level is really low though and he isn't eating well. I find myself listening to his breathing and wondering if he is breathing more shallow or rapidly than he was before. We are beating the bushes trying to get access to one of 2 promising treatments for him. The main one we would like to get for him is called Rexin-G. I sent an email to the ACOR.org osteosarcoma email list and within a few minutes I started to get emails from folks on it offering what ever information they had on it and who to contact to help us.  

   I am taking Mocha tonight to be tested to become a therapy dog. If she passes the test tonight she will be a certified therapy dog. Once she is certified we can register with Albany Medical Center and get her into a visitation program there. If Ben is inpatient again Mocha will be able to visit him. Ben really likes the idea of Mocha being able to see him and also to share Mocha with the other patients. He wants to walk through the halls with Mocha by his side. She sleeps at the foot of the ladder to his bunk most nights. I think she is really disappointed that she can't get into his bed any more.

8/3/2009

Today was the first day of Ben’s new chemotherapy treatment plan. We have changed it because the results of last week’s CT scans were less than positive. The 3 tumors we knew about soon after Ben’s last surgery had indeed grown slightly even with the chemotherapy he was receiving. In addition to the growth there are additional tumors on both sides. So we decided to scrap the Nexavar and have moved on to Interferon with Etoposide. On the ride to the hospital I talked with him about the new treatment. I explained that I had exchanged emails with the mom of a young man who is also fighting osteosarcoma. I said, “His mom said in the email that the Interferon had worked for her son. He didn’t receive the etoposide so you are getting more than he did.” Ben replied, “That’s good to know. That’s really good to know.” She told me that he had been on it for 9 months and it held the tumors at bay during that time.

When we arrived at the hospital Ben had his counts done and then it was time to give him the Interferon. It is given through a subcutaneous shot. Ben hates shots/needles. Even little ones like this one. It uses a very fine needle and is given into the triceps muscle. He would have none of it and as you can imagine Dad caved and offered a bribe. I ordered him a set of 6 glow-in-the-dark Uglydoll Ice-bat action figures for him. They aren’t even out yet – it was a preorder. The shot is painful when it is injected. The nurse who gave it to him massaged his arm until it stopped hurting.

Around 10:30 Master Yoshi was in the playroom at the clinic for the “Brave Belts” program. He teaches karate every Monday to the kids that wish to learn some moves. He calls Ben his prize student. I was amazed as he put Ben through his paces. Ben remembered the moves and exercises like he had been practicing them every day. He went through all of the moves from the most basic up to a series of moves that are necessary to master to attain a blue belt. He executed them beautifully. The whole time he was doing these movements he was attached to an IV pole that was delivering fluids and the etoposide. As he moved across the floor, Toshiko, the clinic’s child life specialist maneuvered the pole alongside him. She watched every move and as he took steps across the floor throwing punches and blocks she wheeled the pole keeping it close enough to not pull, but, far enough away that he had the freedom of movement to do the moves. After he finished the lesson he went back to the treatment room and fell asleep within the next 30 minutes. The nurses came in periodically to check his blood pressure to make sure it wasn’t dangerously low. One of the main reasons he was so sleepy was that one of the support drugs they gave him was Benadryl. The other is that the interferon stimulates his immune system so it causes him to develop fevers, feel achy and other responses. I read somewhere that it can make you feel like you have the worst flu you have ever had, Soon after getting home Ben feel asleep on the couch. True to form he developed a fever of 101.6. We gave him some Tylenol and the fever broke. We spoke with Dr Pearce and it was not unexpected. He will be in the clinic in the morning for day 2. He is a real trooper and this is not going to be easy for him. We have managed to have some laughs today.

Overall it has been a good day filled with hope, joy and activity.

8/1/2009

   I woke up this morning and after getting dressed I sat down at the computer to check our email accounts. Someone sent us a really great article about a new drug trial that will be starting soon. In my Google alerts there was also an interesting article about activating natural killer cells in the body to attack the cancer. I looked at both articles. After I finished I opened up Ben's web site. I realized as I hit the news link and was watching the page come up that I was looking for an update. I found myself chuckling. As you can imagine there was no new news on the site. I guess after 2 1/2 years I am expecting expecting to be writing updates in my sleep. Laughing at yourself is always a good thing and is a talent that I need to work on.

Last night the boys and one of their classmates went to Chuck E Cheese with his younger brother. I didn't go because I wasn't feeling up to it. I am not the biggest fan of that place. It can be very over stimulating. All 4 boys had a great time. They are really good friends to each other. Afterwards Ben and James went over to their house for a sleepover. We half expected to get a call last night and have them delivered half asleep to our doorstep. The last time James ended up coming home. As Stacey and I were talking about we remembered that on that night it was just James that was sleeping over. Obviously the 2 of them are having a great time. They haven't come home yet.

Ben will be going to the clinic early Monday morning to start the new chemo. The Interferon will be delivered by a shot in the butt. Ben doesn't do well with shots. Come at him with 1 1/2 inch needle to stick in his chest and he is fine. Put a 1/2 inch needle that is baby fine on a syringe to poke in his arm or butt and he flips out. Stacey and I have been joking about what we think he is going to ask us to get him for a bribe. I don't like needles either so I do understand his reaction. After he gets the Interferon they will watch him for a period of time to make sure there is no reaction and then he will get an IV with the Etoposide over 3 hours. After that they will watch him some more. There may also be some other support drugs they will give him to help with side effects.

We are in complete agreement that this treatment is what we need to do. We are still examining alternatives so we know what is out there. We have access to a great group of parents and caregivers of children and adults who are in the same fight we are. We share information regularly and even if the information we find out isn't applicable to Ben it may be something that helps another person. If you are reading this and know someone battling any form of cancer suggest that they look at the ACOR.org web site and sign up for the email list for that type of cancer. The lists are moderated. Some patients use it, but, most of the folks on it are caregivers and support for patients. It has definitely been one of the things that has helped us stay strong and find the courage we need.

7/30/2009

Ben spent the better part of today at the children’s oncology clinic at Albany Medical Center receiving some of his chemo. While we there we talked with Dr Pearce about our next steps with treatment. There is a study that looks interesting for a new drug, but, the study has not been published yet. We looked into a drug called Rexin-G, but, Ben is not eligible for the study because he is not 10 years old. We can look into getting it through compassionate access, but, it is hugely expensive and would not be covered by insurance. In my research the estimated cost is $500,000 per year. We have decided to keep that one in our back pocket for now. We are looking into a couple of drugs that we have learned about through an osteosarcoma email group we belong to on ACOR.org. One of them doesn’t even have a name yet. It is called MLN8237 and is in Phase 1 trials. Drug companies don’t usually name their drugs until they think the drug may make it to market. It has been helpful for one of the young women whose Mom emails regularly. Dr Pearce is looking into that one. It is an Aurora A Kinase Inhibitor. The complexity of the human body and the fight against cancer is amazing. I have learned about proteins, enzymes, genes, angiogenesis, apoptosis and other things that they never told us about in biology class. Based on the information that we have right now the plan is to stop the current chemotherapy regimen and start the new one as soon as possible. Unless we learn something new we are going to start Ben on a treatment plan that is centered on Interferon and Etoposide. Ben does not qualify for the study that is going on and the study recently closed to new patients anyway. Both of the drugs are commercially available for other uses so we should be able to get them. As always the question will be whether or not the insurance company pays for it or we do. Our insurance company has been great. We really have no complaints and in fact they have covered some things that surprised us. Dr Pearce also is looking into the best way for Ben to receive the drugs and the dosages. Interferon is an immune system stimulator and it can cause some side effects that include aching pain. He will receive large dosages and they will be given every day for five days with 2 weeks off in between. So he will have to spend 5 long days in a row at the clinic every 2 weeks. It will be outpatient though so that is great. We have heard of some folks who have responded well to this treatment. We are not ruling out any treatments, only choosing the one that makes the most sense to us for right now. One of the other treatments we would like to consider, but, seems unavailable for a number of reasons is an anti-IGFR antibody. I think if we had a way to get that one we would use it.

Last night at the birthday party everyone had a great time. James was disappointed and upset for the last 30 minutes or so because he didn’t get to choose the 3rd ball game they played. The kids played Dodgeball, Capture the Flag and Kickball. It seems James is not a kickball fan. It was wonderful to see the kids running around the indoor field laughing and having a great time. Ben had to sit down a few times and rest. At one point, while resting, he said, “Next time we have games that don’t make you run around so much.” After saying that he stood up from the chair he was sitting in and ran back onto the field to play dodgeball. Needless to say he is having a much more relaxed day today. After the party Ben O. came back to the house and the boys hung out for a while. They watched some TV and traded baseball cards with each other. One of the things we have seen is that given the chance kids look out for each other. Ben and James are there for each other and kids like Ben O. step up and try to help. At one point they were all playing a game that required you to reach up over everyone else and catch a tossed play ball. Ben couldn’t really do it so they kind of put him in front and if the ball was tossed over him somebody else caught it. I watched as Ben O. would jump up over the other kids and then hand it to Ben so he could get a turn throwing the ball. A few of the parents commented that Ben looked great. He does. His hair is coming back and is long enough to look like a short, summer hair cut. We have not told him that the tumors have grown and that there are more of them. We have decided to wait until we are sure that the Interferon treatment is what he will be receiving and then we will talk with him. If he asks us before then we will tell him the truth. We have never and will never lie to him or James.

We are so blessed to have a community around us that supports us the way they do. Thank you.

7/28/2009

  We have not told Ben or James yet about the scan results on Monday. Tomorrow evening we are having the birthday party for the boys at the All-Star Baseball Academy. The kids will have a great time playing games and using the baseball batting cages. They are so excited. Last week we put together bunk beds for the boys and they love them. Ben is sleeping in the top bunk. Last night I crawled into bed with him and when he woke up he was thrilled to see me next to him. I didn't really sleep much. I lay there listening to him breathe.We spoke with Dr Pearce today and she is consulting with several of the researchers on the treatments that are potentially available for Ben. There is a chemotherapy regime that uses interferon as a major component and that looks promising. There are several other trials, including Gleevac, that have shown some promise, but, we are hoping to find one that has demonstrated real successes. We have known that once the osteosarcoma metasticised the statistical odds were stacked against Ben. We have found hope from many places. The support we have received from you continues to give us strength, courage and hope. Tomorrow night will a night of great joy and fun. The boys will be running around and havi9ng a great time. Tonight at Noogieland the laughter of the children was music to my ears and gave me something positive to focus on.

7/27/2009

Yesterday Ben and I had a great time playing golf with Aunt Carol at the Fairways executive course that she lives on in Mechanicville. He played for 4 holes and the rested for 3 and then played the 8th hole. It was really humid out and that just sucked the energy out of him. He putts really well. He is eyeing my putter because his club is too small for him. In fact the Jr set that he has is too small. I may take him out to be sized for a starter set of clubs. He really enjoys being on the course and just swinging away at the ball. He needs to have someone who really knows golf work with him on adjusting his swing. He has limited mobility in his upper right arm so he is just chopping at the ball. Sometimes that is very frustrating for him. I have the number for someone who sent us a message the other week and I am planning on calling them in the next couple of days.

Ben had his scans today. They did a CT scan of his lungs and his sinuses. I don’t know what they said about his sinuses. I just hung up the phone after talking with Stacey. Janice, one of our favorite nurses at the clinic (love them all actually) called to tell us what the report stated. The tumors that we knew about have continued to grow. There are also additional tumors on both sides of his lungs. I do not have the exact numbers. One is too many. We will be talking to Dr Pearce at some point tomorrow about what the next steps will be.

When we were at the hospital today Ben stopped in to see his friends in the Radiation Therapy Department. They absolutely loved seeing him and marveled about how much he has grown since they treated him. It was a while ago and they have continued to keep track of him. They check this site regularly and whenever there is a new update they pass it around the office. It was an absolute joy seeing them celebrate Ben in the waiting room for the scans. Ben continues to amaze us and if we didn’t trust the hospital we would be a wondering if they were looking at the right scans. His hair is growing back and if I didn’t tell you he was fighting for his life and there was a monster attacking him from the inside you would think he was a healthy, fun loving 9 year old.

7/22/2009

As I am writing this the boys are rough housing in their bedroom. We gave them our gifts and they opened the gifts from Uncle Rick, Aunt Carol, Miss Kathy and GrammaMac. So far they have been thrilled with every gift. The other day Uncle Drew and Aunt Sandy gave James a Justice League of America comic book volume is ½” thick and it was a huge hit as were the books and Lego sets Uncle Rick brought today. GrammaMac gave the boys a giant red light saber. It is at least 6’ tall. They have already decided where it is going to hang in their room. Ben just walked into the room holding the giant light saber and using a creepy voice said, “Say hello to my little friend.” Ben of course received a Lego battleship that was a big hit. Aiva came over and we sang Happy Birthday to the boys and they blew out the candles. It was really low key. At one point after the cake I was standing by the sink and rinsing off the cake knife when Ben came along side me. He looked at me and joyfully said, “We’re 9 years old. I can’t believe it. Isn’t it great. This is really exciting.” I agreed and gave him a hug – after putting down the knife. The day is winding down. Thank you all for the birthday wishes. I have read them all to the boys.

7/21/2009 

  It has been nearly 1 month since I last provided you all with a full update. The Twitter updates are nice, but, as many of you have pointed out the full updates are missed. I am not exactly sure why, but, I have just not been able to bring myself to sit down and write. We have certainly had some pretty amazing experiences with the trip to Boston for Ben to be bat boy and the experiences at Double H. I am writing this to break the ice and get the words flowing again. After the last update I became keenly aware that it was only a year ago that we nearly lost Benjamin. At the same time several of the children and adults that we have come to know arrived at the end of their journeys on Earth. Writing about our experiences makes them so real for me that it can be very overwhelming. I think that not writing has only allowed me to slip deeper into a quagmire of negative feelings, thoughts and emotions. It may not have been noticeable on the outside, but, I have been struggling to function in this world. I am back, no excuses. I am focusing on the positive – focusing on Benjamin and James.

Ben is doing really well on his new chemotherapy. It does have the side effect of making him look like he has the goose bumps on his head. We have heard about worse side effects that can be very so we are thrilled that he is only having the mild one. His energy levels have improved, although we haven’t been pushing him too much. Last week he and James both attended a golf day camp at Mill Road Acres. The first day they allowed Ben to use a cart and he shot a 49 on 9 holes. He was thrilled and James was very proud of his brother. The following 2 days the cart was unavailable and Ben was not able to complete the 9 holes. He did participate in all of the lessons though. After the boys excitedly told me about Ben’s 49 on the first day I asked how James did. James looked a little sheepish and said, “Not so good.” Ben, with great enthusiasm, said, “What do you mean? Every time you hit the ball it really flew. He would step up to the ball and “WHACK.” The ball just took off. He hit is farther than anyone. “WHACK””WHACK”” James smiled and said, “That’s true I did it far.” They both continued to make assorted club hitting ball noises until we were laughing and I was telling them, “Okay, that’s enough.” It is really nice to see sport that James really likes. We are going to try and get both boys out onto a golf course soon. In the meantime we plan on taking them to the driving range near our house at least once a week. Ben has a set of Jr. golf clubs and James is using a set of clubs that had been cut down for Aunt Carol. Since I have a beautiful set of clubs there are no excuses not to play.

Tomorrow is the boys’ birthday. They will be 9 years old. It is wonderful and we are probably going to have as many parties as we can. We were going to have a party for family and some adult friends tomorrow, but, it looks like the weather is not going to cooperate. This morning Stacey said to me that she had “Made an executive decision - we’re going to move the party to Saturday.” The boys party for kids is going to be next week on Wednesday. We are planning on having it at the All-Star Baseball Academy in Latham. It should be a great deal of fun. We are just now getting the invitations out so it will be interesting to see who will be able to make it. There has been much discussion over whether or not girls will be invited. It turns out that some girls may not count as girls. We are doing the same thing with gifts that we did last year at the boys’ party. Instead of presents for the boys we are asking the kids to bring items that we can donate to the “Holiday Shop” at the AMC Children’s Hospital clinic - toys and things for adults too. Each year they set up a little shop in a conference room and allow the children to go through it and pick out presents for their family. The child life specialists help the kids make lists of their close relatives and help them pick things out. The gifts are all wrapped and then they bring them home to put under the Christmas tree or whatever gift giving celebration they participate in. We do allow the boys to each pick one toy before we bring everything to the clinic. Last year Dr Pearce ended up having to bring what we brought to them home to keep in her garage because they don’t have much storage at the hospital. Stacey loaded her car with 4 garbage bags filled with stuff. It turns out to be great re-gifting opportunity.

6/22/2009

I am woefully behind on updates to the site. I have at least 4 half finished ones to complete. I want to tell everyone about the Greatest Father’s Day weekend of my life. Last week we were given tickets at Gilda’s club during Noogieland for the “Walking with Dinosaurs: The Arena Spectacular” for the performance in Albany at 7 PM. We had wanted to take the boys, but, we have really been blowing our budget lately so we were thrilled. During the week the wonderful group of people I work with decided to do something nice for us and managed to get us tickets for the 3 PM show on Saturday. On Friday evening as she left our office the ring leader of the group who gave us the tickets said, “Don’t forget, tomorrow at 3. The tickets are at the will call window.” We weren’t sure what to do with the other tickets. We know so many wonderful folks to share them with. We talked about it and decided the Cameron’s family was the best choice. He goes to Gilda’s Club and Noogieland almost every week with the boys. I am sure the boys are all talking about the show today.

The 3 PM show was fantastic. It was amazing to see the life size dinosaur puppets walking around the Times Union Center. We were directly opposite the giant teeth that the dinosaurs entered through in the back row on the first level. The seats turned out to be perfect. The dinosaurs came directly towards us for a good deal of the show. It was cool to be at eye level with a 40 foot tall brachiosaurus. You could almost feel the breath of the T-Rex as it roared to the delight of the audience. It was a perfect mix of entertainment and paleontology. We were sitting near the platform that contained the puppeteers who were controlling the movements of the dinosaurs with the exception of the walking. Each dinosaur had a “driver” that was inside or beneath the dinosaurs. These puppeteers controlled all of the neck, tail and head movements and sounds. During the intermission the boys and I decided to give it a chance and went to the platform to see if they would talk with us. A very beautiful and kind young woman took the time to speak with us and explain their work. The boys really thought it was cool. They were still talking about it on Sunday. Kari explained to us that they controlled the larger neck and head movements with a device called a voodoo rig. She controls the smaller movements and the voice of the dinosaurs in her control. She uses a really cool, high end, tricked out joystick to control the mouth, eyes, eyelids and other movements of the head with one hand. She uses the other hand to play a keyboard that controls all of the sounds that the dinosaur can make. She talked to us about how she had worked at Disney World and the boys talked about their love of puppets, Lego League, robots and other things. James told her about Ben’s website and his page with jokes on it. Afterwards he reminded me that we needed to update his page. Something he hasn’t been interested in doing for a while. Later that night Kari posted a note to the guestbook. The boys did a happy dance when we showed it to them. They each had to read it for themselves. Kari you are a rock star.

On Sunday we headed out to Cooperstown, NY for the day. For those of you who keep track we didn’t miss breakfast at Circle Diner. We went there for breakfast on Saturday morning. Ben and I arrived first and sat at the table while we waited for Stacey and James to arrive. Ben couldn’t wait to tell the owner Frank and his favorite hostess about his upcoming trip to see the Boston Red Sox play on July 3rd. Frank is a big Yankees fan, but, tolerates Ben being a Boston Red Sox fan. Everyone was thrilled that Ben will be a Bat Boy that day in addition to going to batting practice with Jason Varitek. The other night they asked us to forward Ben’s clothing sizes to the Red Sox. A very good friend of ours has reached out through her business contacts and put this together. Of course we are never sure exactly how things will turn out, but, whatever happens this is really cool and Ben is shouting about it from the rooftops. We know that several people are already trying to get tickets for friends and family members to go to the game. I am sure there will be many DVRs recording the game in our area. James acquiesced the other day to not wearing Yankees gear to the game since the Yankees won’t be playing. While we were sitting at the Circle Diner a nice man sitting across the aisle talked to Ben about the Red Sox (big fan) and Fenway. He pointed out that the Red Sox would be playing Seattle and that Ken Griffey, Jr. would be playing. He told Ben that he knew him and his father. Ben loved hearing about it all and the nice gentleman wished him well and told him to enjoy the game as he left. Stacey and James arrived and we had our traditional breakfast at the Circle Diner.

The trip to Cooperstown was nice. We talked and laughed about a number of things. It took us about an hour and a half to get close enough to Cooperstown for the boys to consider us there. We ended up parking in the Yellow Lot just outside of town, near the Farmer’s Museum. We decided to bring the wheelchair with us because we knew it would be a long day and we wanted to preserve as much of Ben’s energy as possible. Stacey and I each thought the other had gone to the bank so neither of us had cash with us. The ride into downtown on the trolley was going to be $10. We looked at each other and checked for sign that the driver might be able to take a credit card, he couldn’t. Ben reached into his pocket, pulled out a $20 and stepped towards the door to the trolley turned to us and said, “Don’t worry, I’ve got this covered. It’s Father’s Day.” I brought up the rear carrying the wheelchair onto the trolley. We arrived in downtown Cooperstown and went to breakfast at a restaurant called TJ’s after I stopped at an ATM. The breakfast was great and the boys were thrilled because they gave them a packet of 10-15 baseball cards instead of crayons and paper. We talked with the family next to us. They were restarting a new tradition because the Hall of Fame game was changed this year. Everyone in the town just seemed to be in a good mood. We finished and then went out to Main St to stake out curb space for the parade that started at Noon. While we waited the boys and I went into a card shop. The boys poured over the cards. I told them they could each pick out 1 card. James found a Derek Jeter card that was “signed” and Ben found a reproduction Ted Williams card. Both boys were thrilled and it was only $8 for both cards. We had told them that they could each spend $25 on souvenirs for the day. The parade consisted of local dignitaries, celebrities, business folk, organizations and the graduating class of the local high school in trolleys. It also had 3 filled with the ball players that would be playing in the game that afternoon. As the parade went on we had to keep pushing Ben and James further into the street because many of the adults along the parade route seemed to think they were more important than the children around us. The guys on one side of us did a great job of picking up candy and passing it back to the children that didn’t want to go into the street to get it. As the trolleys containing the players went by us one of the players threw a baseball card to Ben. It landed right in front of his wheelchair. Ben reached down and picked it up. It was a Paul Molitor card. I looked back to the trolley and indeed Paul Molitor was sitting right there. I’m still not 100% sure who in the trolley actually tossed it. It was now Ben’s mission for the day to get Mr Molitor to sign the card. It would prove to be a tough thing to accomplish, but, Ben made it happen through a crush of adults along the fence with his brother backing him up. The game was great and I could write a small book about everything that happened while we were there. Most of the adults demonstrated great kindness towards us and the other children that were in attendance while some adults took advantage of the relaxed atmosphere and disorganization of the first time event coordinators to get signatures they could sell. We saw some dealers and adult collectors who were very gracious, but, it only takes a few to mess up a good thing. The day was great and Ben and James worked together to get Ben up to the fence along the 3rd base line through a crushing crowd of mostly adults. Ben reached his hand over the fence towards Paul Molitor holding a sharpie and the card in it. James was standing behind him shielding him from being smushed and encouraging him. I was squatting in the bleachers trying to keep an eye on them without blocking the game from the spectators around me. I couldn’t take watching the crowd of adults squish the children around them intent on getting their own items signed. I shouted, “Hey adults, get out of the way and let the kids get there things signed. Today should be all about the kids.” The people around me in the stand cheered in support of my words. One guy standing near the boys turned around and shouted, “Give me a break.” I then shouted, “Mr Molitor, when you’re reaching for items to sign only take items from the hands of children.” Ben keeping his hand held high over his head, on the tips of his toes, reached over the fence towards Paul Molitor and I watched as the next item he grabbed was the card in Ben’s hand. The boys bounded back to their seats with huge smiles on their faces – mission accomplished. I saw Paul Molitor reach past an adults hand and take the next item from a boy that was standing near Ben. The game was great and we all enjoyed our time at DoubleDay Field.

James and I went to the Cooperstown Wax Museum while Stacey and Ben ate a little lunch. James really wanted to go to the Wax Museum. We tried to talk him out of it, but, he really wanted to do it. I told him that in the past when I have gone to these “Wax Museum” type places they were very disappointing, cheesy and not worth the money. I jokingly said, “Do you want to go badly enough to use your souvenir money to pay for it yourself?” He immediately replied, “Yes.” The two of us enjoyed walking quietly through the displays. For the most part it was better than I expected. James agreed that the Babe Ruth display was indeed cheesy. It was overpriced for the wax figures, but, not a waste of money because I was spending time with James.

After the Wax Museum we headed to the Baseball Hall of Fame. The boys participated in a scavenger hunt that took us throughout the entire facility. They absolutely loved it. We looked at the displays for minute details. We took pictures in front of their favorite displays. We talked about the history of Baseball. Ben had a religious experience in front of Babe Ruth’s original contract with the Red Sox. It was really a godsend that we decided to bring the wheelchair for Ben. He never would have lasted all day. He would go from walking with great energy to just dropping into the chair to recharge his batteries.

After the Hall of Fame we headed back to our car on the Trolley. I carried the wheelchair onto it and sat in the back with Ben while everyone else was towards the front. As we sat there going through the city Ben put his arm around me and asked in a smiling, hopeful tone, “Did you have a good Father’s Day Daddy?” I looked at Stacey and James sitting next to each other four rows ahead of us smiling and laughing. I thought about all of the wonderful things that had happened that day and looked at him. I found myself choking up as I said, “Ben, this was the best Father’s Day ever.” He asked pointedly, “Are you crying?” I said, “No, I am just choking up.” “Is it a good choking up?” “Yes, Ben, it is a good choking up. It has been such a great day that I wish it could never end. I am just really happy.” “Good, than it is okay. I love you Daddy. Happy Father’s Day.” I hugged him and turned to watch the trees go by.

6/16/2009

I watched this morning as Ben happily ran across the front lawn and up the street towards the bus stop to catch the school bus. He was still pulling on his Red Sox field jacket as he ran. I could tell he had a big smile on his face even though I couldn’t see it. As we sat in church on Sunday before the service I explained ot him that he was going to be receiving a drug called Sorafenib. He was confused and a little taken aback when he asked, “What about the Gleevac?” I told him that the drugs were related and that we had decided to start with the Sorafenib first. He doesn’t like it when we change plans. I must admit I’m not a big fan of it either. I like to come up with a plan and stick with it until we know we need to change. The worst time psychologically for both Ben and me is not having a plan or having to wait for information to help form a plan. We are all happy that we know what we are doing to battle the osteosarcoma.

6/17/2009

Yesterday Stacey spent hours on the phone with doctors, dentists, a specialty pharmacy, the health insurance company and a hospital. She was trying to get the new drug Nexovar (Sorafenib) delivered and paid for as well as the details regarding Ben’s surgery tomorrow. Ben is having his baby teeth removed tomorrow at Samaritan hospital in Troy, NY. His permanent teeth are all coming in, but, for whatever reason they are not pushing out his baby teeth correctly. It places him at an increase for infection and other issues. The Reclast (Zolodronyc Acid) he is on can cause jaw bone issues as a side effect and having the teeth issue could compound the problem. It also may prevent us from having to give him braces on his teeth when he is 16. All of the doctors, his regular dentist and the oral surgeon we spoke with agreed that it was necessary and should happen now during the chemo side effect lull when his counts are all good.

Originally we thought the insurance was not going to cover any of the dental procedure or the hospital. Our dental insurance really stinks. The health insurance decided to cover the hospital portion of the surgery so we only have to pay for the oral surgeon out of pocket. The Sorafenib is another matter. Our health insurance declined to pay for it. The case worker has been wonderful. He immediately suggested that we appeal. Stacey talked with the pharmacy and the manufacturer at length. We have submitted my W-2s and paperwork for the manufacturer’s reduced or free drug program. Our out of pocket costs for the Sorafenib is $550 for a 10 day supply. When we told Dr Pearce she was very surprised that it wasn’t more expensive. Stacey and I were also pleasantly surprised. We found out why the price seemed so low. It is really a 5 day supply that we received. Stacey is working with the pharmacy to get additional supply. They were trying to be nice and just send enough to get us through until the insurance kicked in. We originally thought this was going to be a $12000 week, but, it looks like it will end up only being a $5000 week. We are so blessed to have the Ben fund. Thank you for everything you have all done to help us take care of Ben.

6/12/2009

  We have discussed the options with Dr Pearce and she has researched the trials and drugs that are available for Ben. The Gleevac(Imatinib) study that is going on in Syracuse is unavailable for Ben. It is closed. In looking at the other studies and the information that was sent to us after Stacey spoke with Dr Kim at the NCI(National Cancer Institute) we have decided to give Ben a drug called Nexavar(Sorafenib). It is similar to the Gleevac I mentioned earlier. They are both tyrosene kinase inhibitors. I know that is like saying that we are using a flux capacitor and interacitor, but, that is the language we find ourselves speaking these days. We are finding that trials we thought were open or available are closed or not accepting new patients. One promising drug is only available in a doble blind study and we are not ready to give Ben something that could be a placebo. We asked Dr Pearce what she would give him if we did not have to worry about availability or cost. Nexavar it is and we will keep the Gleevac in our back pocket. It turns out that we can only get the drug through a specialty pharmacy and that the manufacturer has to give us permission. Stacey spent a couple of hours yesterday and today dealing with the manufacturer and Albany Med to make it available. The woman at the manufacturer was very nice and the documents were ultimately faxed to Albany Med and we confirmed that Dr Pearce has them to fill out and fax back. Hopefully they will have the documents by Monday. After the company formally agrees to make the drug available to Ben we will see if our health insurance will cover the costs of the pills. It is our understanding that he will receive it orally in pill form twice a day. We don't know the dosage or the cost yet. Based on what we have found on the internet and with Stacey's discussions with the manufacturer it averages about $3500 a month.

  Enough medicine talk. Last night at baseball practice we had a great time with the boys playing against the adults in a pick up game inside the gym. Ben actually pitched to me. I scared everyone in the room, including myself, when I hit a screaming line drive straight back at him. He ducked just enough to have it skim across the top of his head. All I saw was the ball heading towards his face and the shocked look on the adult on 2nd base behind him. Tony thought it was going to hit Ben for sure and then at the last minute he saw the ball heading for him so he ducked too. Everyone had a great laugh after the play was over.

  We went to a birthday party tonight for one of the boys on the team. Everyone is very excited about their playoff game tomorrow at 10:30 AM. The boys will be getting their early so we can take pictures in front of the Green Drakkoman sign. The game is at the Boght Baseball Complex on Field 7 off of Rt 9 north of Guptills in Latham. The team we are facing has some of the boys friends on it. I am anticipating that it will be a good game. We played the other team early in the season and they scored most of their runs when during the coach pitch innings. There are no more coach pitch innings. The kids pitch the entire game with the exception of a couple of special situations. The Green Drakkoman vs Price Chopper - two teams, two different shades of green. The other coach is a great coach and focuses on fun and being positive too.

6/10/2009 Part 2

 On Tuesday he went for his bone and CT scans. He has 2 tumors on 1 side and 1 on the other. We are stopping the current treatments of MTP, Gemcitibine, Taxotere and Reclast (Zoledronic acid). Ben will be entering a trial for Gleevac (Imatinib Mesylate) next Tuesday. He will be taking 1 pill twice a day. We are all very upbeat and positive about this. The osteosarcoma that Ben has seemed to be very aggressive from the beginning. Gleevac holds a special place in my heart. I had run 3 marathons before Ben's diagnosis as part of the Team in Training program for the Leukemia and Lymphoma Society. Gleevac is a drug that was championed by the LLS and they contributed significantly towards the research. At one of the marathons a Mom told about her daughter in the hospital dying. They had been told she probably had 24 hours to live, she was comatose and being Catholic she received the last rites. The doctors told the Mom that there was a new drug that had just started to be given to humans and they could give it to her daughter, but, there was very little hope. She approved them giving it to her daughter. When she stopped at that point in the story, choking back a tear the Mom looked to the audience and said, "I would like to introduce you to my daughter." as a beautiful 12 year old girl walked onto the stage. Gleevac is now being tested for osteosarcoma.

As an aside I keep a list of names next to my computer monitor at work of the children and adults we have met along this road. Many of the names are folks on here. Today one of my colleagues looked at the list and asked me about it. He said he didn't recognize any of the names as coworkers. I told him who they were and then I pointed at a couple of them. I pointed out Bryan who wanted to teach Ben how to snowboard, but, passed away before he had the chance. I pointed to another little angel and then I pointed to Kelly and Todd. I told them how these two brave adults faced their battles with courage and strength. I pointed to a gentleman who had inspired Ben with music and funny videos. I pointed to Brendan's name and told of him going to Siena and befriending Ben. I stopped and said these are my heroes and inspiration. They have taught me and continue to teach me to be concerned about the things that really matter. I pointed to the little
squiggles next to some of the names and said those represented angels wings. He looked at me and quietly said, "Wow, you really have a rich life."

6/10/2009 Part 1

  We just heard from Dr Pearce about Ben's scans. He has 2 tumors on 1 side and 1 tumor on the other. Dr Pearce found out last night and didn't want to disturb or evening. I am sure she had a rough night. She has already found another clinical trial for us to enter Benjamin into. It is based out of Syracuse and involves taking a pill everyday. She told us that it shouldn't have too many side effects and that it would not interupt summer too much. She also said that we should have as much fun as possible this summer. She also said, "There is always hope."

6/8/2009

The regular season for The Green Drakkoman baseball team ended on Saturday with a win. Ben came up to bat twice and went down swinging. Ben's blood counts were very low and I think his energy level was suffering. He just had surgery on May 11th that involved going into his chest between his ribs and here he is swinging a bat. He wears lacrosse rib armor when he steps up to the plate. James made it to 1st base on a walk and stole 2nd base in a close play. He also ended up making it home on an RBI. We are incredibly proud of them and all of the members of the team. We finished with a record of 3-8-1. The playoffs will be starting after all of the other teams finish their seasons. I will keep you all posted.

Yesterday Ben, James and I went to a local driving range and hit a couple of buckets of balls. I just showed the boys how to hold the clubs and let them swing away. Ben amazed me at how well he was doing. He did one really amazing swing in particular and then pooped out for a while. I wasn’t so sure he didn’t hurt himself. I talked to him for a while and he wasn’t in pain when I touched his ribs and he was breathing normally so I let it go. After we were home for a while I asked James about hitting the balls and he said, “I enjoyed it a lot more than I thought I was going to. It was really fun.”

Today was counts day for Ben. On Thursday his ANC was 10 and we thought he might end up with a neutropenic fever over the weekend, but, he didn’t. As you know we let Ben pretty much regulate himself and watch him for signs that he is having troubles. We also try to limit his exposure to sick kids as best we can. Ben and his mom went down to the hematology/oncology clinic at the Children’s Hospital at Albany Medical Center. I helped them gather the light sabers that we have at the house. We managed to find 4 of them. I wasn’t quite sure why Ben was so adamant about bringing them. I guessed that he wanted to show them to one of the doctors, nurses or residents. I was wrong. I found out later that Ben had decided the clinic needed a Light Saber Academy. His mother went along with it and I think Dr Pearce had agreed to it last week when his heart rate was breaking 200 not knowing what would happen. On the ride to the clinic Ben asked his mom, “Should I ask the students to call me Master?” She replied, “Are you going to call them Padewan?” They finally agreed that he would be just Ben. I guess it was quite the sight at the clinic today. Ben had a bunch of kids in the hospital hallway taking light saber dueling lessons and having friendly light saber battles - one hand holding a light saber, the other moving their IV poles around making the adults nervous. The kids were laughing and having a great time. It was all Ben’s idea and he made it happen. I am not sure if this will be a regular program, but, if it is we may need more light sabers in order to arm the doctors and nurses. I smile thinking of Dr Pearce dressed as Obi Wan.

6/4/2009

Today was a tough day of chemo for Ben. He reacted badly to the MTP. He had the rigors and his heart rate went up to a little over 200 beats per minute. He had quite the workout. The actually called Dr Pearce off of the floor down to the clinic to check on him. He is very tired right now, but, who wouldn't after the exertion he went through. We are going to go out to dinner at Applebee's. It's Ben's choice tonight. We are all looking forward to tomorrow.

Stacey read my last update and started to cry a little. I asked her what was wrong because I thought it was all good news. It turns out I did some selective hearing. I heard that they showed necrosis and apparently focused on Ben saying "Dead, dead, dead...." when the sentence about them showing some necrosis. It was really that most of the rest showed NO necrosis. I am so sorry to have misinformed you all. I guess I was hearing what I wanted to hear. We are focusing on the positive and that is that the chemotherapy did kill a good number of the tumors. So it is working - just not to the level I lead you all, and myself, to believe.

6/3/2009

We have really great and positive news to share with everyone. We heard back from the doctors regarding the pathology of the 16 nodes/tumors that were removed from Ben’s left lung. I am paraphrasing and the numbers are approximate. It looks like 1/3 of the nodes/tumors removed were not tumors. They were artifacts/scar tissue from previous surgeries and other non-cancerous nodules that any of us might have at any given time. The rest unfortunately were osteosarcoma tumors. Of those about half were completely necrotic or dead. The other half of the tumors all showed signs of necrosis (dead tissue) of varying levels. In other words all of the cancerous tumors removed were either dead or dying. As Ben said cheerfully when his mother told me the good news – “Dead, dead, dead…They were all dead.” What this means is that the current treatment plan is working. He will continue to undergo chemotherapy for the foreseeable future and into 2010. We will probably not adjust his current chemo cocktail unless it is necessary. Next week, on Tuesday, Ben will receive a chest CT scan and a whole body bone scan. The scans will give us a great picture of where he stands and will determine NED status. For those of you who don’t know NED is an acronym that means – No Evidence of Disease. I have really come to love the name NED.

Last week Ben and James both had an opportunity to meet James Preller. He is a local author of children’s books. Some of his titles are very popular among the spooky, mystery fans. After Ben’s diagnosis I did a search on osteosarcoma books and found one called “Six Innings: a game in the life.” I was curious and immediately went out and bought the book at our local bookstore. The central character of the story has osteosarcoma and is confined to a wheelchair so he has to call the play-by-play instead of participating in baseball. It is a story of friendship, baseball and life that takes place around a championship little league game. At the time I didn’t think Ben was old enough for it. Recently we read the book to him and he has almost finished it himself. The book is dedicated to Dr Jennifer Pearce - the same Jennifer Pearce who is Ben’s oncologist. Ben asked Mr. Preller about it and he told Ben that Dr Pearce was his son’s doctor. His son had leukemia when he had the idea for the story. He also told Ben that his son recently turned 16 and had just passed the tests to get his driver’s license. When Ben told me the story of their conversation Ben said with a big grin, “Now he really has something to worry about.”

On the topic of baseball The Green Drakkoman team is doing really well. We won on Monday night. It was our 2nd win. The team is a really amazing group of kids. Every one of them supports each other in ways that are genuine and beautiful. They cheer for each other. They encourage one another and console them when things don’t go well. One of the kids hit a home run during the game on Monday. The boys were so thrilled in the dugout they could barely contain themselves. They celebrated together like each of them had hit it themselves. I heard 2 of them tell Jeremy they were proud of him. I almost fell over. Our next game is tonight at 6 pm and our last regular season game is at 12 Noon on Saturday.

We are all looking forward to the golf tournament on Friday. I was talking to Dave Donlon last night and the attendance is going to be great. It was almost a sellout – only 20 slots away. It is going to start with 5 kids hitting tee shots simultaneously to kick it off sometime between 8:30 and 9 am. Ben and James will be there for the start and then they will be taken to school. They will return for the awards dinner as soon as school gets out.

5/24/2009

  Today was an absolutely great day. The day started with Ben making sure that I was awake so we wouldn’t be late for church. Even Gramma Mac was ready before me. We made it to church with plenty of time to spare. Ben was a little disappointed because today there was no Sunday school so he had to stay in the sanctuary for the whole service. Everyone was thrilled to see him and his presence was noted by the minister in the announcements and in the main prayer. At the end of the service one of the members of the congregation was so thrilled to see him that he came over shook Ben’s hand and kissed him on his bald head. I could just tell that he was so happy the moment just came over him.

After the service the 3 of us headed to Circle Diner for breakfast. Just as they say us my phone rang and it was Stacey saying that she and James were heading over to join us. We switched tables with no fanfare. I absolutely love that place. They treat Ben really well and manage to pull of what I think is almost impossible. They make him feel welcome and special because he is a regular, not, because he is bald. If you happen to go there for a meal tell them “Ben sent you.” and thank them. Ben actually ordered the big breakfast today and did a great job on it.

After breakfast we finished making the overhead soda bottle water rocket launcher project we started on Saturday. If you check out youtube.com you can see some other folks making them - http://www.youtube.com/watch?v=icQhLT4QCO8. We have talked about doing this since last summer and it was a blast – pun intended. We fired it off 6 or 7 times and we had a great deal of fun. I think if we make another one I will make some changes to the design. If you have kids this is a cheap way to have a great time and it is even a science project. We also used it to launch a water balloon into the air. It went so high I think it would really hurt to get hit by it. The fun ended with Ben going inside because he was tired while James, Aiva and I had a water gun fight with some neat water guns Stacey bought of the boys this year.

After dinner James, Ben and I went to see Star Trek. The boys thoroughly enjoyed the movie. I did jokingly cover Ben’s eyes (I couldn’t reach James) when there were a couple of scenes that were a little too sexy. It didn’t really matter because if there was kissing they both closed their eyes anyway. When we arrived the theater is doing a “Stars of Hope” promotion to raise money for childhood cancer research. Ben suggested we donate so we did. We also waited in line after the movie to play a game they had set up. The boys didn’t win any prizes. Ben turned to me as we walked away and said, “Hey, we made a donation to a good cause.” James added, “And it was fun.”

As we drive home we passed Hoffman’s Playland. We stopped and found out it was open until 10 PM. Since it was just before 9 we headed in for fun. James and I went on the bumper cars. Ben decided bumper cars were not the best ride to go on 2 weeks after lung surgery so he watched as James and I bumped each other. Ben decided he wanted to go on the Tilt-A-Whirl ride. I asked him if he was sure and he said yes. Ben absolutely loves that ride for some reason. He has headed to it right after nasty chemotherapy. The girl at the ride kept an eye on him and I don’t think she would have taken his ticket if he hadn’t offered it to her. James ran off to go on a different ride and I kept an eye on both of them with my feet planted firmly on the ground. Ben ended up going on the Tilt-A-Whirl twice and we all went a couple other very tame rides. As we were heading to the car to head home Ben turned to me and said, “I don’t think the surgeons would be really thrilled if they knew I went on that ride tonight.” I told him I thought he was probably right and that they would probably find out by reading this site. He had a big smile on his face the whole time he was on the ride. Well almost the whole time.

5/23/2009

  Ben is sleeping right now. He tires very easily. His lungs are getting stronger each day. On Thursday he went to the hospital and had standing chest x-rays taken from the front and the side. He is doing well. He has a little air pocket in his chest. It is called a pneumothorax. They can be very painful, but, he is not complaining. He does say that his back is hurting when he stands for a while. It hasn’t grown and eventually the air will be absorbed into his body. The Physicians Assistant at the clinic told Ben that he is absolutely amazing. Dr Porter told him he is the energizer bunny. The PA said that Ben needed to write a book to tell other patients how to be strong and get through this with the style, grace and good humor that he has witnessed. I am so in awe of this little boy. Today he came to see The Green Drakkoman baseball team play. He actually contemplated taking a turn at bat. I will not be surprised if he steps up to the plate in the next game – Wednesday at 6. Tonight after the game all the players gathered in a circle and we put our hands into the center and discussed what to shout after counting 1-2-3. One of the boys suggested “sportsmanship” and many other suggestions came pouring out of them. One of the 7 year olds who normally is very quiet said, “Why don’t we say something for Ben?” Several other boys agreed immediately. I asked what they thought they should say and they were unsure. One of them said, “Let’s just say ‘Green Drakkoman.’” Ben thought that was wonderful so I counted 1-2-3 and the cheer went up to the skies. I truly love these boys. Each game they become more and more of a team. They are so compassionate towards one another that you can’t help but enjoy watching them. The Green Drakkoman sign is in center field and it clearly says “Focus on the Positive.” Next game we will take a new team photo in front of it. After the game one of the dads from the other team came over and shook my hand, looked me straight in the eyes and said, “We are pulling for your boy every step of the way. He looks great.”

  Earlier this week we had a meeting with the school about the plan for Ben next year. Unfortunately, I could not get away from work for it. Stacey broke down and started crying during the meeting at one point. The school district is working so hard to make Ben feel like a normal kid at school. His main teacher for next year has been spending his own time to learn about chemotherapy and its effects on teaching children. I cannot imagine ever finding a more supportive place to have Ben. They are fully prepared to have Ben attend when he can and provide tutoring in school, at home, in hospital. Stacey and I are so scared sometimes and I know that I have been practically losing my mind lately. The other day I was in a not so good frame of mind and a simple conversation with someone I went to high school with turned my outlook around. The conversation had little to do with our situation directly. I found it somehow comforting though. I think these small miracle interactions are what get as all through what ever we are facing.

5/20/2009

  On Monday I spoke at a major fundraiser for the Double H Ranch in Lake Luzerne, NY at the Saratoga National Golf Course. As many of you know Double H has become very special for our family. It has really become a place of great joy, renewal and inspiration for us. I was asked to explain to an audience of a couple of hundred people what Double H Ranch means to us. I was surprised at how difficult it was to deliver this speech. I didn’t really know anyone in the room. Here is the speech: 

  In September of 2006 my, then 6 year old, son Benjamin was diagnosed with a rare cancer called osteosarcoma in his right upper humerus. He had limb salvage surgery that removed the tumor and replaced 80% of his upper arm bone with a donor bone in February of 2007.

  At the recommendation of his doctors and nurses we signed him up to attend one of the summer sessions at Double H. I will never forget that first time as we pulled up to the parking lot. The counselors were cheering for the children. As we parked 2 of them came over to the car. They introduced themselves to Ben, his twin brother James and the rest of us. One of them took Ben’s hand as he was a little bit afraid. He had never stayed overnight by himself any where before. The other ran on ahead shouting, “Hey everyone. This is Ben Stowell. It is his first time at Double H.” You would have thought he was a rock star. They welcomed him and us with a wave of love that overwhelms me to this day. Any fear or trepidation he, or any of us, had disappeared. The love continued as we entered the main building to sign him in. Everyone, even the parents, campers and families who were signing in cheered for the next folks walking in the door. I cannot drive onto the property without shedding a tear…of joy.

  We turned over our most precious wounded bird to the loving care of strangers and they returned him to us shining brighter than I ever could have imagined. One of the hardest things for us to do throughout this journey has been to preserve Ben’s childhood. Double H has been key to grounding his childhood. Ben was able to find a community of people who understand what he is going through in a way his family can’t. Double H has literally been a lifeline for him. The summer program allowed Ben to be independent. To experience unfettered life. To ride a horse. To push himself up into the trees on a ropes course and ride a zip line back to the earth. To Laugh. To celebrate all that is good in the universe of a child. Ben, like many of the children, participated in every activity offered to him with a joy and zest that is contagious. The children’s lives at camp are not interrupted by meds or IVs. The nurses bring any medication they need to the kids. If the child is out riding a horse, playing ball or making art the nurses find them and give them their medicine with as little interruption as possible. I could speak for an hour about just one of Ben’s days at camp. He is the quintessential Double H camper and Double H is the quintessential camp for kids like him and families like ours. We have participated in family weekends. The winter adaptive program has taught Ben to snowboard and me too. 46 years old, never on a snowboard in my life. Ben and I raced down the mountain. He won. If they can teach me they can teach anyone.

  I was up at Double H yesterday to pick Ben's twin brother up from a weekend that was hosted at Double H for the siblings and children of those facing life threatening diseases. Another piece of the magic of Double H.

  In March of 2008 we found out that the osteosarcoma had metastasized to his lungs. We were told that it was inoperable. He started on the highest dose of a chemotherapy drug called ifosfomide that was possible. Ifosfomide is a drug that has a lifetime max that can be given to someone. It has a side effect called neurotoxicity. It can cause the patient to exhibit symptoms of manic-depression and schizophrenia. In this …last ditch…..effort he was given doses at levels that caused our precious little boy to become someone we had never met before. The infusion rates were adjusted and he returned. We spent 5 days at a time watching for changes so the medicine could be adjusted. We did not know what was going to happen so we arranged for Ben’s Make A Wish trip to happen as soon as the treatments were over. We also Double H to fit Ben into camp a week after we were to return from the trip. We headed to San Diego and LegoLand. The day after our arrival in San Diego Ben’s immune system dropped through the floor. The good bacteria in his body turned on him and over the course of a week his body began destroying itself. He was hospitalized and at one point while I was taking care of James my wife was asked to sign a DNR. I called Double H to tell them what was going on and that Ben would not be able to make it to camp. The amazing young woman on the other side of the phone said words in such a positive, loving, caring tone that I will never forget – “Oh Mr Stowell. Don’t worry Ben will make it to camp this year. You just get him home and we will have a place for him no matter what.” I immediately went to the hospital and told Ben what she had said. His smile lit up the room. He had not smiled since entering the hospital. I saw a spark ignite in his eyes. Within 24 hours he had stabilized. Within 48 hours of that conversation we were seeing improvement. There was also a San Diego fireman who was a lymphoma survivor who showed up with a showed up with his Ladder crew. Ben wants to be a fireman and is an honorary member of the Latham Fire Department. He told Ben that he was never alone and that fireman always stick together, support each other and never give up. I am convinced that without Double H and that fireman our trip back from San Diego might have been a very different one than it turned out to be.

  The ifosfamide worked and subsequently it was determined that the tumors had been shrunk enough for him to be operated on and they were removed. Chemotherapy has continued.

  We got Ben back to Albany Med and then home. A few days after he was home 6 counselors from Double H showed up on our doorstep. They said, “Even though Ben is scheduled to come to camp before summer’s end they wanted to make sure camp came to him.” That day the boys had a blast and a little bit of Double H magic was in our home. Ben made it to camp and had an amazing time. He is doing well. He is looking forward to 5 very special days at camp this summer.

  The osteosarcoma has returned 2 additional times. On Monday May 11th Ben had an operation to remove 16 tumors from his left lung. He was discharged today and technically is considered NED – No Evidence of Disease. I was informed as your rounds of golf were ending that he had arrived home. You may think I am a little crazy to be here right now. Our family can think of no better place for me to be then to be here speaking with you about Double H. I asked Ben this morning for 3 words to describe Double H. He immediately said – FUN. He thought for a little while and then added Special and GREAT!. I also asked him if there was anything he would say to a group of people who helped make Double H possible by volunteering or giving money. He immediately replied with a loving and earnest, “Thank you.” As Ben’s dad and a man who is more used to being on that side of this podium I can only echo my son – “Thank you!” It is my hope that none of you ever have to really know how wonderful the Double H Ranch truly is.”

5/7/2009

Last night I took Ben and James to the circus. Stacey and Cousin Betty decided not to go so we invited 2 of the boys friends to go. It was just me and the boys. 1 adult and 4 8 year old boys navigating through a very crowded circus show could have been disastrous. Not with these kids. They were fantastic. I asked them to always stay focused on each other and make sure they new where I was at all times. They followed through beautifully and we had a blast. As an adult any of the acts were not very new to me, but, watching the kids explode with laughter or “oooo” and “aahhh” was a great experience. We laughed the whole way home as I asked each of them what their favorite acts were. It was wonderful watching these 4 friends make a memory. I think they will remember laughing together at the clown that popped bubbles that made a fart noise when they exploded for a very long time; not to mention the giant elephant poops that made them laugh hysterically. They were also impressed by the 7 guys on motorcycles speeding around inside a spherical cage that was so small it was amazing they could even fit inside it standing still. The aerialists were cool as were the “bendy people” who were amazingly flexible and strong. I know I will remember the night for the rest of my life because of the joy of these boys. I felt selfish because I was the only one of their parents that had the chance to spend the evening with them.

Tomorrow night there is a fundraiser for the Ben Fund and to celebrate the release of their “Recipes of Love” cookbook at the Blue Creek Elementary school. It will run from 4-7pm. A local pizza place – Little Bites & More – will have pizza “to go” for the people who preordered it. The 3rd grade class will be distributing and selling the cookbooks. In addition to the cookbooks 3 NFL players have volunteered their time to sign autographs throughout the evening:
                    George “Butch” Byrd: 5x All Pro Running Back, Buffalo Bills
                    Derick Brown: 1st Round Draft pick Tight End, NY Giants
                    Tim Sherwin: Hall of Fame Watervliet HS and Boston College, Tight End, Baltimore/Indianapolis Colts and the NY Giants

               
They are also going to raffle off a number of items that include: autographed NFL memorabilia, gift certificates from local businesses and other items. I know that the Giants sent an autographed photo of Justin Tuck that he autographed specifically for this event. There are also gift certificates from one of Ben’s favorite restaurants – the Circle Diner.

Ben received his L-MTP-PE chemotherapy today. It made him really cold and gave him the rigors. The first time I saw Ben get the rigors it was a little frightening and then Stacey told me it wasn’t even close the first time he had them when they were in NYC. Hold your hands out in front of you and tighten every muscle in your arms and hands. Imagine having your whole body do that and not have any control over it. If he has it really bad he receives a medicine that is a muscle relaxer. It knocks him out so we try not to give it to him unless he really needs it. When I spoke with Stacey she said he was comfortable and watching TV and just recovering from the side effects. The rigors is exhausting so he may not go to baseball practice tonight. It will be up to him and how he feels at 6 PM. The really big and great news is that Ben’s hair is growing back. We aren’t sure how long it will last or what it will look like this time. It is definitely growing back though.

5/6/2009

The game last night was amazing. Kris, our assistant coach, and I drafted a team of the most wonderful boys. They are supportive of each other and at the same time the beautiful, slightly imperfect 7 and 8 year olds they should be. I am watching as they become a true team and last night they really showed their strengths developing. Two spectators who have watched the 3 games so far told me after the game they have seen improvement. Ben is our lead off hitter and he came up to bat 3 times last night in 5 innings. We scored 3 runs but only 2 counted because the game was called because of darkness in the middle of the 5th inning. James actually scored the 3rd run and Ben made it to 2nd base. The team managed to load the bases 3 times. Our biggest issue is with the coach’s ability to pitch during the first inning. The boys pitch after that. Every team we have played against scores their runs when the coach is pitching. Last night we tied 2-2. One of the kids actually said, “Both teams won.” He quickly added, “But we scored the most runs.”

After Ben struck out for the 2nd time he walked back to the dugout with a big smile on his face and spring in his step. He had a full count against him. He had foul tipped 1 pitch and had 3 swinging strikes. He put his bat away and turned to his Mom and said with a grin of pride and satisfaction, “That’s the longest it has ever taken them to strike me out. I did great.” The entire team is picking up on his example and we point out to each other to always, “Focus on the positive.” Ben and James were both walked in their next at bats. Almost every player managed to get on base one way or another last night.

Fly 92.3, a local radio station, has a morning show team that has 2 members who are diehard Yankees fans and they have decided to look for a new team to throw their hearts into. Chrissy and Brian are still Yankee’s fans, but, they are not giving them their hearts any more. They are looking for a new team to love and support. Ben and James listen to their show every morning on the way to school. They are asking people to email suggesting local teams for them to love. I have sent them an email telling them about “The Green Drakkoman” team of NCYBA. I explained the story of Ben and the Green Drakkoman and told them the boys are a great team. I am not sure if they need to be bombarded with emails, but, here is the email address for the show – morningrush@fly92.com. Chrissy actually contributed a recipe to the Recipes of Love Cookbook the 3rd grade put together for Ben.

5/4/2009

    I will give you all the big news first and then talk about this past weekend. We spoke with the doctors today and Ben will be going in for his surgery next Monday - 1 week from today. He will be going in on 5/11 to have the tumors removed from his left side. On the last scans he had 5 tumors on that side. If you recall the surgery on his right side resulted in the removal of 11 tumors. We are all really glad to get the tumors out of him. Technically on Monday night he will be NED once again. The chemotherapy cocktail he has been on seems to be effective on the tumors. Ben is scared, but, amazingly brave as always. He will be having chemotherapy on Thursday as he normally would and we anticipate that he will receive his scheduled chemotherapy on the Thursday after the surgery. I will post more details as we get closer.
    
   On Saturday the Green Drakkoman NCYBA baseball team had a game. The boys were all excited and we were waiting to take the field and dugout as the previous game ended. As the team went out to the outfield one of the adults from the previous game asked me about the Green Drakkoman name. Ben was standing right there and he hesitated to hear what I had to say. I told the gentleman that, "My son Benjamin had been diagnosed with a rare cancer called osteosarcoma and the Green Drakkoman is a super hero that he created. The Green Drakkoman is helping him defeat the cancer along with a strong team. A group of friends and family decided to sponsor the team and name it after the Green Drakkoman." Ben smiled, said, "I'm Ben and I created the Green Drakkoman." and ran out into the outfield to warm up. The man followed me into the dugout. As I was hanging the boys batting bags and bats in the dugout the man quietly asked, "Is it terminal?" Trust me that is not the smartest question to ask a man about his son when he has a bat in his hand. I have no idea how long I stood there looking at the bats formulating my answer. I know he didn't mean anything bad. In fact he genuinely cared. I could see in his face that he was trying to imagine himself in my shoes. I had seen the way he looked at Ben and it was a look of love and caring, not, gawking. I also know that question well becuase in my heart I have asked the question many times. My first thought was how to fit in to my response that everyone was terminal. Instead I turned to him and said, "We don't think so. He is responding well to the chemotherapy and will be having surgery soon to remove the tumors in his lungs." I could see him relax a little as he thanked me, said he would pray for Ben and left the dugout and field. Words are amazing things and I am still realizing just how much power they have. I know many of you have mentioned that using twitter is nice, but, you like the longer posts. I do too. 
                
   On Sunday Ben and I had breakfast at the Circle Diner. I love that place. When we walked in half the staff greeted Ben by name. A group of the employees had been asking me about the golf tournament and they are excited to put together a foursome. The Circle Diner also donated some gift certificates to the NFL fundraiser this Friday. Ben and I were in the car. Actually he was getting into the car and I was standing next to the car. He mentioned the web site. He said, "We have to put more Green Drakkoman stories up on the site." I agreed and said, "We do need to put more stories up. You need to write some more of them too." He then looked up at me, straight into my eyes and said, "You need to keep the site going you know. No matter what happens you need to make sure that the site keeps updated. Even if the cancer comes back again." I promised him that I would always keep it going until he could take it over. He also talked about the Green Drakkoman Foundation during breakfast. He wants to make sure we are helping other people and kids with cancer.

4/26/2009

   Today was pretty amazing and i think it was really tough on Ben. It was incredibly warm today and we are just not used to it yet. I am not sure how hot it really was, but, I am pretty sure it was well into the 80s and there were almost no clouds in the sky. If it was in the middle of the summer it would have been perfect amd we all would have thought it was a cool day. The day started out well and we enjoyed the opening ceremonies. We went back home for a while and returned to the ballpark facility around 1:30 for pictures at 2. I could tell the sun and heat was really sapping Ben's energy and unfortunately we were far from any air conditioning and there wasn't any shade where we were waiting for the pictures. Parking was tough and it took a long time for the team to arrive. We ended up shooting the pictures around 2:15 and finishing by 2:30ish. At one point I put Ben into one of the dugouts on a nearby ballfield to get him out of the sun. After the pics I bought him a hot dog and both of them drinks at the concession stand as we headed to the car.

   Once back home everyone rested and I cranked up the air conditioning. We arrived back at the ballfields around 5:30 for the 6 o'clock game. Stacey had waited back at the house for Cousin Betty to return. They arrived at the fields around 6:30. Unfortunately, they missed Ben's at bat. We were the home team so the other team batted first. The first inning was coach pitch and the opposing team's coach pitched beautifully gentle throws that their team connected with repeatedly. They ended up scoring 5 runs in that inning and batted through 9 of their hitters. While they were up the heat was getting to Ben. I sent him to our car to cool off with his 2nd grade teacher who was their to cheer on Ben and several of her other former students. The AC in the car helped rejuvenate him. She brought him to the dugout in time for his at bat. I walked with him towards the batting box. As we were walking he had his batting gloves in his hands and started to tuck his bat under his right arm so he could put them on. I saw as he winced in pain. I asked, "Are you all right?" He looked up at me and said, "Yes, I just smacked the place were my incision is under my arm. It realy hurt." The incision he is talking about is 6-8" long and is between his ribs. They had to spread his ribs to get into the lung cavitiy. He also has a smaller incision adjacent to it where the chest tube was in. He was released from the hospital less than 2 weeks ago. I asked him if he wanted to sit back down and I would have him bat later. He said, "No, I am here to bat and to lead my team." I couldn't bear to pitch to him so I asked one of the parents to pitch. He is our pitching coach. I watch as Ben stepped into the batting box and raised his bat. Earlier he and I had practiced at home and he was swinging with great strength. I saw that he was no raising the bat as high as he had earlier. The first pitch came and his swing was good, but, slower than earlier. He was being cautious and I new why. I reminded him how to swing without hurting his arm and side. I have taught him to let go with his right arm if he feels pain or his muscles tighten. It has worked well for him. On the next pitch the ball hit him in the leg. I heard the crowd gasp and poor Chris wanted to crawl under a rock. I joked loudly with him and the crowd by shouting, "Hey, your only supposed to hit your own kid." Ben bounced around a little bit, but, returned to the batting box. His swing at the next ball was a little better, but, it was strike 2. On the next pitch he tipped the ball and it hit the dirt hard just behind the plate. He was starting to get his swing back a little. As Chris pitched the next ball I think I stopped breathing. I could litterally feel the crowd behind me wishing for the bat to connect solidly with the ball. I even had one of those quick movie flash forwards happen in my head as started to swing. You know the one where the kid swings, hits the ball, and it goes to the fence. Unfortunately it was a swing and a miss - strike three. It didn't even have a nice "thunk" into the catchers glove. Ben was shaken and visibly disappointed as I walked him back to the dugout. I told him I was proud of him. I cannot imagine myself coming even close to the heart and courage he demonstrated and I don't know many adults who could have been so graceful and brave. He just had chemotherapy on Thursday and it was the one that is really tough.

  At 6:45 Stacey took Ben and James over to the ballfield that the high school team was playing on to get them ready to throw out the first pitch. I stayed with The Green Drakkoman as put a few of the kids on base. Alas, we did not score. If any one is really great at pitching to kids and having them hit let me know. The high school team had signed balls for both boys and Ben did a wonderful job going out on the field and throwing the ball. The young men on the team took the time to talk with both of them and wish Ben well. Several of the boys already have scholarships to good baseball colleges and it is our understanding that at least one of them has been scouted by major league teams. The boys were very proud of the signed balls that we now have esconced in plastic cases right next to their David Ortiz baseballs. Ben did not get ack up to bat in the game. James did get up to bat. He did a great job. Last year when he came up to bat he would slowly swing at the first 3 pitches no matter how wild and stike out. Tonight he waited and only took swings at pitches that actually looked good. He tipped one foul and ended up with a full count - 3 balls, 2 strikes.The next pitch was not really good and I could see that he wanted to swing. In fact his bat started to move. He returned it to his shoulder and the pitch was called a ball. The umpire did a great job and James earned his walk. The beautiful part about James is that he was just as thrilled to get to the base by a walk as he would be if he had hit the ball or it had hit him. He just likes to get on base. I was so impressed by the maturity that he showed and I made sure he knew how proud we were of him. The Green Drakkoman ended up losing their first game. The Green Drakkoman played their best and never, never gave up. These kids are amazing. We lost by the runs that were scored when their coach was pitching. The kids played multiple positions and had a great time. I watched carefully and we will practice this week and work on the things that we need to work on. Tomorrow is another day and the kids were happy at the end of the game.

   Everyone here is excited about going to see the Red Sox play the Yankees. Ben fell asleep almost as soon as his head hit his pillow. We will be bringing the wheelchair we have with us in case we need it. He was tired tonight, but, in a healthy way.

  We received a copy of the cookbook that the 3rd graders put together to raise money for the Ben Fund. As Stacey was driving us home I started thumbing through it. I looked at many of the recipes and started reading through the ads and dedications in the back of it. Stacey asked if I was alright as I held back tears. I have never had a cookbook make me cry before. The love that is in that book shows through beautifully. There are recipes in there that are family "secret" recipes and "secret" or personal recipes from professional Chefs from as far away as Rome, Italy. I love the quote that the school librarians from Blue Creek put in their ad - "Outside of a dog, a book is man's best friend. Inside of a dog, it's too dark to read." The cookbook is titled "Recipes of Love" and it is true to its' title. In the dedication of the cookbook it mentions that the cookbook is partially dedicated to the Green Drakkoman - "With the support of family, friends, and the community, the Green Drakkoman will continue to inspire each and every person to live each day to the fullest." We are members of an osteosarcoma international support email list and just before I started writing this I read an email from one of the leading osteosarcoma experts. In that email he talked about one of his most important prescriptions for his patients - "Live life with wild abandon and enjoy the beauty." Today and this weekend seem to be hammering home the message.

4/24/2009

 Ben is feeling well today. He is a little tired, but, everything seems to be functioning well. I will be giving him a shot later tonight that will boost his white blood count and immune system. We will be keeping a close eye on him tomorrow. It is going to be a very busy day for us. The whole weekend is focused on baseball. We need to make sure the camera batteries are charged and we have enough room for digital pictures. Saturday will be focused on the kids playing baseball. It is opening day for North Colonie Youth Baseball and the boys are excited. In the morning they will have opening day festivities and then in the afternoon the boys will have their Team and individual photos taken. At 6 PM The Green Drakkoman will take the field for their first game. The entire team is very excited and everyone is happy to be playing together. I think they have already bonded as a team I only have to make sure it continues. At 7 PM Ben and James will be throwing out the first pitch at the High School's first (I think) baseball game of the season under the lights. Our game will probably still be going on so Stacey and Cousin Betty will make sure they get to the field the High School is playing on. They are both in the same baseball field complex so it isn't a really big deal. On Sunday we will be heading to Boston to see the Red Sox play the Yankees at Fenway. We will be sitting in section 19, behind home plate. California Cousin Betty reached out to someone she knows who had a connection with someone at the Red Sox. She told him that Ben was feeling well and would probably be able to go and asked if he could help work a miracle and get the boys to one of the games this weekend. She knows that not only does Ben loves the Red Sox and James loves the Yankees. James is a rare Yankee fan because he isn't a Boston hater. I hadn't really thought about it until now, but, it may be an interesting night after the game. We are not sure exactly how the tickets became available. We do know that Betty has made this possible and we are incredibly grateful. I know that no matter what this weekend will be one that will be remembered.
        
  There are also a couple of other groups of people who continue to give our family incredible support. The North Colonie school district community has wrapped Ben up in their arms and continue do everything they can to help him beat osteosarcoma and to support us in this battle. The High School baseball team having the boys throw out the first pitch tomorrow is just 1 small example. The track team is working out the details of having a running event. An elementary school in the district has adopted Ben and they held a day of giving back to the community dedicated to him. Not only was it a magical day they even had a professional magic show. The 3rd grade classes from our elementary school has put together a cookbook and have been taking orders for some time now. They are having a "Cookbook Party" on May 8th at the school. 3 NFL players will be there signing autographs and auctioning memorabilia. A local pizzeria will have pizza there for people to pick up to take home. They have pre-sold over 600 cookbooks and have ordered several hundred additional books to sell. My understanding is that they have been getting a great response from people who didn't preorder and they are sure they will sell all of them. I think they are bringing some of them that have arrived to the baseball game tomorrow.
         
   Another amazing group of folks that keep turning up every time I turn around are old friends from my grade school and high school days. At every fundraiser we have had I come across people I haven't seen in almost 30 years. It amazes me that the number could be so great. Are we really that old? We all seem to look like it should only be 10. I was in math classes with one of the NFL players that will be there on the 8th - Tim Sherwin. Dave and Sarah Donlon have stepped up to help my family twice. The first time was when Stacey and I had a fine craft store in Watervliet and someone tried to burn down the building. The woke up to see weird flickering orange light coming into their bedroom and called the fire dept. There was only very minor smoke damage to our store. The fire investigator told us that if the fireman had arrived 5 minutes later we probably would have lost everything. Now they have come to help us again. They formed the Elise Donlan Foundation in memory of their beautiful little daughter who was accepted into heaven in angels arms after a lengthy battle with a rare disease. They have contributed to the Ben fund and now the Elise Donlon foundation is dedicating their 7th Golfing "Fore" a Cure golf tournament to Ben. On Friday June 5th at the Fairways of Halfmoon the tournament will take place. Ben and James both get a kick out of the fact that Dave and I were in Cub Scouts together and his Mom was my favorite Den mother. Now she would be a Den leader. I sold my golf clubs last year at our garage sale so I will have to get new clubs. Stacey laughs because I have been trying to justify new golf clubs since the boys were born.
                   
   We find ourselves in a very scary place. It may be scary, but, we are never alone. We have an army behind us that lifts us and carries us onward when we think we can go no further. After the last relapse Ben asked me , "Why does it keep coming back? Can't we make it go away for good?" I told him that I didn't know why it kept coming back. I also told him that what we have to do is keep removing it and try different chemotherapy and other treatments until we find the right ones. I told him that we would never stop. I also pointed out that we had a whole army of people that were helping us. I watched him contemplate my words and then he quietly acknowledged that we would keep going until the battle was over. I can tell you that when he goes to the fundraisers and events it gives him such a great lift. The fact that the High School is having him participate tomorrow has lifted his spirits greatly. In fact we usually don't tell him about things like this until we know that he can actually participate. He gets upset when he misses something. He was very upset last weekend that he couldn't go to the Siena Women's Water Polo games. The one thing that gave him solace was that they had come to visit him in the hospital. Now The Green Drakkoman baseball team and the events of this weekend are carrying him through this latest round of chemo. We will be bringing a wheelchair with us to Boston, just in case.

4/6/2009

  We arrived at the hospital and he went into the pre-op area to get ready. He was very comfortable as we saw familiar faces in the preparation area. The nurse who did his interview was very kind and jovial. After we discussed the surgery with her and Ben answered her questions she brought him a hospital gown, robe and slipper socks. He and I went into the bathroom to get him changed. He put on the gown and robe as I collected his clothes in a plastic bag. He asked me to help him with the slipper socks and I agreed. As I bent down he balanced with his hand on my head. I held out the slipper sock and told him to lift his foot higher. Neither of us was really paying attention to where his knee was. He lifted it quickly. Bam! His knee slammed into my face and right eye like we were in a professional wrestling match. It literally stood me up. I saw stars and staggered back a little. The first thought I had as Ben called out, ”Are you okay? Daddy are you okay?” was that at least I was already at the hospital. The world stopped spinning and Ben and I ended up laughing as we finished putting on his slipper socks. As we walked back to the seating area and Stacey I took off my glasses to adjust them. I think they saved me from a black eye. As I fixed them I looked at the right lens and there was a perfect print of my closed eye. You could even count my eyelashes.

  Ben decided not to take the cocktail that would make him loopy before going into the operating room. He was very relaxed and comfortable and had Caymus, his first stuffed animal, with him. He knew that once he was on the operating table they would put a mask over his face and he would go to sleep. He decided his Mom would go in with him to the OR. I said my “I love you”s, gave him a kiss and went out to the waiting room. Miss Kathy had already found us a place to wait. While I was sitting with her the rest of our entourage showed up. Stacey came out and told us what had happened after I left. The OR nurse came out to get him. The 3 of them walked down the long corridor to the operating room. They walked past several ORs and other people on gurneys. Ben was holding onto his mothers hand and gripped it tightly. She could see that he was a little scared as he turned to her and said, “Caymus usually likes to ride instead of walk like this.” She encouraged him and the nurse told him how brave he was. He walked into the OR and climbed onto the operating table. As they positioned him the anesthetist placed the mask over his face. Stacey gave him a kiss on his forehead and told him she loved him and that we would all be waiting for him. He nodded bravely and then closed his eyes.

  We anticipated that the surgery would only take 2-5 hours. The time clicked by and the waiting room attendant came over to tell us that after they positioned him correctly the actual first incision took place around 2 pm. We occupied ourselves as best we could and asked for updates several times. We watched as there were fewer and fewer people waiting for loved ones to come out of surgery. We heard at 6:30 pm that they had started to close. The surgeon came out to talk to us around 7:30 pm. He explained the whole surgery to us and told us that they would be sending up to PICU soon. The surgery took a great deal of time because hi lings had a great deal of scar tissue and adhesions to his chest wall from his previous surgeries. He also told us that he was able to be very thorough when he examined/palpated Ben’s lungs. They removed 11 tumors from his right lung. They took out 5 tumors with a wedge resection that removed about 1 ½ inches of lung tissue. We have subsequently found out that all 11 nodules were osteosarcoma tumors. Ben finally arrived at the PICU around 9 pm. Stacey and I watched as the nurses lovingly positioned him in the room.

   The anesthesiologist talked to us and told us that they wanted to keep him heavily sedated for most of the night. He was on a respirator that was breathing for him. His eyes were taped closed he looked a little pale and puffy. They told us that he had received a great deal of fluids and a unit of blood during the surgery because he lost a lot of blood. He looked comfortable as they took the tape off of his eyes. I went out to the hall and one by one DoeDoe(Stacey’s mom), Miss Kathy and Aunt Janine came in to give him a kiss and say goodnight.

4/5/2009

Ben and I went to breakfast early this morning at the Circle Diner. Today we decided to go before church because there was a baseball clinic at the local high school for players in the baseball league. As usual breakfast was great and he told me how much he enjoys our Sunday morning breakfasts. While we were at breakfast he did a magic trick for our waitress. He emptied a sugar packet into my coffee and then crumpled it up and pushed it into his closed fist. A filled packet fell out onto the table and he showed her that his fist was empty. He pulled it off. After church I was talking with someone and she told me that thinking about Ben had helped her be there for someone else. The person was contemplating participating in a clinical trial for a drug to help with his cancer. He asked her what she thought he should do. She thought of Ben and everything he has gone through and immediately replied, “You should do it. If not for you for the people it may help later.” She told me that Ben had opened her eyes to things she hadn’t really thought about before. It always makes us feel good when people tell us how Ben and James have affected their lives in positive ways.

Ben sat on the stairs today and told us that he is afraid. We told him we understood and asked him if it was just nervousness or was it real fear. He said real fear, but, that he was under control and ready for the surgery. The fear is not controlling him. He is in charge. I have heard police officers, FBI agents, pilots, soldiers and a Navy SEAL speak of fear as they prepared to go into a life threatening situation and say that if there was no fear they would be concerned. The key is to be aware of it, control it and know that you are prepared. Ben is in a place where he is doing all 3 of those things. We have been playing games all day. At one point he said, “I won’t be able to play the Wii for a while so let’s play.” A few of our young neighbors (Cameron and Elizabeth) stopped by with a beautiful card they made for him with words and pictures that made him think of him. Aiva brought him an amazing rock she had painted. In addition to a smiling face the rock had the words strong - caring – brave – helpful – friend – Love.

Ben will be arriving at the hospital by 9:30 tomorrow morning and his surgery is scheduled to start at 10:30. Based on our previous experience the operation should take a couple of hours. We will provide updates on Twitter throughout the day and I will provide a larger update some time after we are settled in the PICU. Thank you all for your thoughts and prayers.

4/4/2009

 This morning Ben came into our room and woke me up. After we exchanged good mornings Ben said, “Two days until my surgery.” His tone was almost that of someone saying it was two days until a holiday or the start of a school vacation. He has obviously resolved most of his fears or accepted them. He is playing with Uncle Drew right now on the Wii. I went to the baseball fields this morning for field work and a mandatory coaches meeting. Before I left Ben asked me what the General Manager of a baseball team does. I explained that he was more of a team owner. He is really psyched to be a team sponsor. I think The Green Drakkoman are going to have a wonderful season. I still have to get the league the design for the outfield sign.

Last night Stacey and I were able to go out to show at a local theater – Proctor’s. It was a great show. Colin Mochrie and Brad Sherwood performed an improvisational comedy show. We have not laughed that hard in a long time. We really needed to be there. Even though the skies are gray today everything was a little brighter this morning. It was also nice because we ran into a few of our friends there as well. I reread my last post and I think it was the first time I really sounded negative. It wasn’t my intent I just meant to say that sometimes the situation someone is in can really stink. We remain steadfast in focusing on the positive and moving forward. I found myself wondering as we were driving home if Colin and Brad ever think about the true value of their show to specific members of the audience. Laughter is the best medicine and last night Stacey and I received the correct dosage. I wonder if they ever think about the true impact their show can have on any given night. It is somehow easier for me to focus on the positive today.

Ben’s surgery is scheduled for Monday morning at 10:30. We need to get him there by 9:30. We know that we don’t even have to ask because you are all already praying for him and giving us such wonderful support. I will update using Twitter every time we get some news on Monday. If you aren’t following GreenDrakkoman on twitter you will see the latest update on this web site in the green twitter box above these posts.

4/1/2009

 Monday night the boys showed Cousin Betty and their Mom several magic tricks we have been working on. Of course Daddy ends up being their lovely assistant. It was really fun to watch them try to get everything to work right. Very few of the tricks actually ended up working as planned, but, the entertainment value was very high. Their best trick is the bag that makes thing disappear. They both performed this trick. Ben used a Lego SpongeBob figurine that he made disappear and then return. James on the other hand asks for a dollar bill from the audience and upn making it disappear said, "Thank you very much for attending the show." and ran away without returning the money. It was very cute.

After the show I was talking with Ben while we watched "The Masters of Magic" on TV. I told them it was time to go to bed after the next trick. Ben replied, "But Daddy I can't sleep at night." I asked him why and he told me he was worried about the surgery. He is afraid it is going to hurt. I have no idea what it feels like so I could only respond, "Ben you've had the surgery before and this time they are only going to be doing 1 side at a time." "Yeah, but, I am afraid it is going to hurt more this time." "What part do you think is going to hurt?" He just pointed at his penis. "I know last time the catheter really bothered you. This time we know what to look out for and we won't let them take it out too soon." If you remember after the last surgery he had to be re-catheterized. He went on to say that the chest tubes really creeped him out. I explained that we would do everything we could to minimize pain and that he had every reason to be nervous and a little afraid. He is also a little upset that because of the 2 surgeries he is going to have that he won't be able to play baseball. He wants me to make him a Green Drakkoman mascot costume to wear at the games. I'll have to see what I can do. I have a couple of ideas. After we talked for a bit his mood seemed to change and when he went to bed he fell asleep pretty quickly.

I wrote the previous paragraphs yesterday and was going to post them when I returned home after work. It seems that my talking with Ben really didn’t quell his fears. I found out that he had talked with his teacher about it during the school day. I do not know the details because I didn’t talk to her. Stacey told me about it. I am sure she did a great job communicating with him in a very supportive fashion. She is a really great teacher and has been wonderful throughout the year.

After I managed to get the boys in bed I went downstairs to watch a little TV before going to bed myself. California Cousin Betty went into the boys’ room to say good night to them. She gave them each a little kiss and Ben told her he couldn’t sleep. She ended up crawling into bed with him as he told her that he was really scared of the surgery on Monday. She told him that she understood and that it was ok. She also reinforced the need for the surgery and that we all felt he was in good hands with the doctor. He agreed and on an intellectual level he obviously knows the surgery is necessary. Our little Ben is growing up and the blind trust he has had up until now his eroded. He trusts, but, is no longer blind. I cannot imagine what it would be like to be facing a 3rd and 4th surgery at the age of 8 ½ knowing that the surgery was being done to save my life. Little kids should be worrying about whether or not they are going to hit a ball. We can’t take his fears away and he is so brave. This just sucks.

3/29/2009

   Today has been a great day. Ben and I went to church and afterwards we followed our tradition and had breakfast at the Circle Diner. He loves it when they recognize him as a regular. He took California Cousin Betty there earlier in the week and one of the waitstaff came over to them and said, "Hey, today isn't Sunday. We usually don't get to see you until the weekend." He thought it was really cool that she ended up being our waitress today. He ate 2 eggs over medium, 2 big pancakes, 2 slices of toast, and 2 big glasses of orange juice. It was nice to see him eat so much.
      
   When Ben was first diagnosed I searched the internet and every source I could find for information on osteosarcoma and potential treatments. I could find very little and what I could find seemed to be at least a year old. I did find a couple of drugs that seemed to show promise, but, the research and trials for them had been discontinued because of a lack of funding and interest on the part of the government and pharmaceutical companies. There were also a couple of items that had entered trials, but, it looked like it would be a couple of years before there would be any real information on them. It was very depressing to see so little being done and that the information and treatment for osteosarcoma was stale. We hung our hope on the fact that the treatment Ben was receiving had been in place and had a reasonably good survival rate. The biggest indicator of survival was how early the diagnosis was made. We were hopeful that because of our miraculous discovery of his primary tumor that he would breeze through it. All indications were positive until the day we found out it had metasticized to his lungs. It was unexpected and surprising that it would happen so fast. He is on his 3rd relapse and will be having thoracotomy surgery on Monday April 6th to remove the tumors from his lungs on one side. The CT scans show 5 tumors on each side. He has been on 3 drugs that have seemed to stopped the growth of additional tumors. On Thursday we added another drug that has been showing progress in recent Phase III trials. 2 of the Drugs he is receiving are brand new. One of the L-MTP-PE has been approved for treatment of osteosarcoma in EUrope and the FDA may be approving it here. It is the first new drug developed for treating osteosarcoma in 20 years. The other drug that he started on Thursday is Zoledronic Acid and the studies that have shown good results were just published in March. That is right March of 2009. I checked one of my sources for osteosarcoma research this morning and there were 49 articles on Phase II and Phase III trials. I could only find 2 in September of 2006. I am bringing this to your attention because I have had a few people ask how we stay so positive all the time. My first reason is that we aren't positive all the time and have had to search for the positive to focus on at times. My second reason is that Ben continues to give us inspiration and examples of what is really important in life and refuses to let osteosarcoma prevent him from being the child he chooses to be. The 3rd reason that we are able to be positive is that we know that there is research being done. There are doctors and researchers working diligently to find solutions. A great deal of the research is being done in Europe and Asia in addition to the US. I have even found myself working at a company that is doing research on a potential treatment that has entered into Phase I trials.

3/28/2009

  This morning Ben and I had an interesting conversation. He was in a very serious mood so I asked him what was going on. We sat face to face he in a chair and I on the edge of the bed. He said, "I am the longest living person with cancer." I was slightly taken aback and asked him what he meant and he replied, "I have been living longer with cancer than anyone else." My first thought was of the young man we met on our first visit to the hospital who had been in treatment for a little over 9 years. I thought quickly and said, "Ben it does seem like you have had it for a long time, but, we know people who have had it just as long and even longer and they are fine and healthy now." He agreed and then I added, "We are working to get it out of you. You will be having the operations soon to remove it and then you will be cancer free again. We are using some new drugs to keep the cancer from coming back." He said, "I know, but, it keeps coming back." I looked him straight in the eyes and said, "Ben, we have great doctors and whole bunch of people helping us. We just have to find the right drug or treatment to keep it from coming back. We will keep trying until we find it. We won't give up, just like the Green Drakkoman." He turned to go play on the computer as he smiled and said, "I know Daddy. I love you." I just kissed him on the top of his little bald head and said, "I love you too Ben." He seemed to have moved on to another activity. I hope I handled it correctly. I have been asking myself that throughout the day.

3/26/2009

  Ben did very well with chemo today and he received platelets as well. We delayed bringing him to the hospital. Today was a very nice day. One of the elementary schools in our school district decided to adopt Ben. They have an annual "Give Back Day" where they try to teach the kids about giving back to their community and others. As part of that celebration the kids decided to help their friend Ben. Ben knows quite a few of the kids even though he doesn't go to the school. They had an assembly this morning and had a magic show. Ben drew the winning ticket for the big raffle. When we arrived they called down several of the kids who knew him to sit with him. He had his own posse made of kids from church, baseball and other places. While I was sitting there taking it all in a mom of one of the kids came up and quickly crouched next to me. I used to work with her. She reached out and I thought she was going to shake my hand. When she took my hand I could feel that she was slipping money into my hands. I thanked her and she disappeared into the gym. We had greeted each other as she dropped of her child and we were coming in. She probably had to rush off to work or other obligations. I quietly slipped the money into my pocket and held back tears. Stacey leaned over and quietly asked me if I was ok. I had no idea how much she handed me until after we left and I reached into my pocket. When we were at the school they presented Ben with an envelope containing a check for the money that all of the children had raised to help pay for Ben's medical care. I am not sure how Stacey and I held back the tears as the kids cheered for Ben, said hello and waved as the assembly broke up. The kids who were sitting with him were disappointed that he couldn't stay all day with them as they did the planned activities. When we told a few of the adults that he was going straight from this assembly to the hospital to get chemotherapy and then most likely a blood infusion you could see the look of concern and the reality of Ben's situation hit them. Even though he is bald it is hard to believe he is sick. I absolutely love this communtiy and the people here. If it takes a village to save a child this village is doing everything they can to save Ben and it really is the children who are leading the charge to help one of their own.

3/21/2009

Ben has been doing pretty well since his chemotherapy on Thursday. He is still on a schedule of chemotherapy every week on Thursdays. On any given Thursday he is receiving between 1 and 3 different drugs. We have talked with Dr Pearce about adding a 4th drug to the protocol. We have also been talking with Dr Pearce about removing the metastatic osteosarcoma tumors that are in Ben’s lungs. We also met with the surgeon who will be performing the surgeries. He will do each lung separately instead of both at once. We think it will be better for Ben to do it in 2 surgeries. We decided not to do the Cyber Knife yet because everything I can find states that a good surgeon can feel tumors that don’t show up in the images and we want to make sure we get everything. If we get to a point where Ben can’t handle another surgery or I find different studies we will use the Cyber Knife.

Tomorrow is the St Baldrick’s benefit for Albany Medical Center at the Pump Station in Albany. It starts around 1 and it will be a great time. Stacey, California Cousin Betty and the boys will be heading down around 2 if Ben is still feeling well. The folks who are getting their heads shaved in Ben’s honor are scheduled to sit in the shave chairs around 3. Unfortunately I will not be able to be there this year. North Colonie Youth Baseball is having tryouts tomorrow from Noon until 4 pm and as one of the coaches I have to be there. I’ll have to shave my own head or maybe I’ll let the boys do it.

The other day we received an email from North Colonie Youth Baseball asking for sponsors for a few more teams. It costs $400 to sponsor a team for the year. I jokingly called to Stacey in the other room and asked her if she wanted to sponsor a team. A couple of minutes later Ben came over to me and said, “I have $300 in my bank account. I’d like to sponsor a team. They need more sponsors. How much does it cost?” I said, “Oh honey that’s a nice idea, but, it is $400.” California Cousin Betty overheard Ben and shouted, “I’ll throw in $200.” I responded to the email and offered to sponsor a team. Gramma Mac caught wind of it and said she would send money to keep Ben from using his savings. I have a feeling a few other relatives will be chipping in too. Ben is probably one of the first little league players to sponsor his own team. The team is going to be called “The Green Drakkoman” and we have asked that the team shirts be green. I have to get them the artwork for the sign. NCYBA has been very good to our family and this seems like a great opportunity to pay them back. Ben really wanted to do it so how could we say no.

3/9/2009

   All I can say is what a weekend. The website was silent with updates and I couldn’t send tweets(twitter updates) because there was no connectivity at Double H. We were in one of the newer cabins along with 3 other families. All together I think there were 9 families there this weekend and whole host of volunteers. Each family had their own volunteer councilor assigned to them that was there to help out with whatever they could. Our volunteer was an amazing young woman named Kaitlyn. She came up for the weekend from NYC. She is an incredibly busy young woman who is in college, acting in plays and working besides. She found the time in her very busy life to come to Double H. She took James under her wing and really focused a great deal of attention on him. She spent hours playing with him in the snow and building snowmen, snow penguins and having snowball battles and throwing contests. She and several other councilors went with James and other siblings on a snowshoe hike yesterday and James loved it. James didn’t really want to participate in the snowboarding so it was good for him to find other things he could do.

           
   Ben on the other hand hit the slopes. He threw himself into snowboarding with a vengeance. On Saturday morning he went down the mountain 3 times in 2 hours. During the afternoon session he nearly doubled that. On Sunday his instructor lost count of how many times he made it down the mountain. He would go down a couple of times and then rest at the bottom for a little bit. It was amazing to see him at work and marvel at the fact that on Tuesday he was too weak to walk into the hospital for his transfusion and needed a wheelchair. I think loading up on red blood and platelets on Friday helped some, but, a good portion of it is him pushing himself to have a great time. He genuinely wants to be able to call himself a snowboarder. His determination to snowboard and the boys wanting me to participate as well caused me to decide to take it up as well. On Saturday afternoon I was fitted for a snowboard, boots and helmet. Ben wanted to be my instructor, but, we found someone more qualified; although Ben continued to give me pointers between his own runs. I must admit I was watching him and trying to do the things I saw him doing. My instructor would work with me for a little bit and then give me some things to practice and go work with somebody else that could make it up the chair lift. Pushing myself with one foot attached to the snowboard up the small practice hill at the bottom and then sliding back down was really hard work. I think he thought I was going to have a heart attack at one point. Ultimately, I managed to make it up the chairlift and down the mountain once by the end of Saturday. Yesterday Ben challenged me to a race by the end of the day and I worked really hard to be able to do it. He ended up winning. He has progressed so much this year. The folks who have taught him tell me he inspires them. After the race I went up to the woman who is in charge of the Winter Program itself and all I could say was, “Thank you.” There was a large group of people watching the race and cheering Ben and me on. That is the amazing thing about this program. Everyone celebrates each other and spontaneous cheers and applause are common. Everywhere you turn there is something wonderful happening; a young woman with cerebral palsy skiing down the mountain completely on her own, a young man who is confined to a wheelchair guiding himself completely autonomously down the ski slope in a chair on skis and poles with little skis on the tips in his hands, a little boy with autism who is normally non-communicative laughing and shouting “me ski, big mountain” as he arrives at the bottom of the mountain between 2 instructors. Double H overwhelms me with its successes. The program keeps growing to fill a need that grows faster than they can catch up. Their biggest problem with the winter program is finding qualified instructors. They provide all of the training for people who are experienced skiers and snowboarders. Ben and I are making plans to learn how to snowboard so we can become instructors at Double H. By the way, I am very sore today and I have a totally new found respect for both of my sons.

       
   On Friday we received the results of Ben’s latest CT scans. There has been no sign of progression. In other words he still has 10 tumors in his lungs, but, they have not increased in size or number. We are continuing the chemotherapy and still discussing and seeking out options for his next treatments while we continue to monitor the status of his disease.

3/6/2009

  The other night Stacey was cuddling with Ben while he was falling asleep. It is normal for conversation to take place during this quite time. Ben asked his mother, “Did God let me get cancer?” Of all of the people I have met in my life Ben has had one of the simplest and strongest faiths in the existence of God. I remember a conversation he once had with David, the minister of our church, about God. David listened as Ben explained to him that God was inside each of us and everywhere. Stacey replied, “God doesn’t let children get cancer. Sometimes it just happens and nobody knows why.” He told her that he didn’t want to have cancer anymore and that he didn’t want to die. She told him that she understood and that we are doing everything we can to get rid of the osteosarcoma. They talked some more and eventually he fell asleep.

  We had a conversation with James the next day and he outlined his plans for the future. He wants to becomes a scientist and live with Ben and his family. He doesn’t plan on getting married and having children. Ben is going to do that. He also told us that he and Ben were going to share the same bedroom forever. We asked him what he thought Ben’s wife would think about it and he replied, “Okay, she can sleep in our room, with Ben.” The amazing thing is that Ben seems to think most of James’ ideas for the future make sense. They have sound plans.

  Ben has asked if he could learn how to shoot a bow and arrow. He wants to try archery. He has also asked about fencing. He remembers that a couple of years ago a brother and sister team did a demonstration of fencing at our church. He and I had a great talk about how they fences in the Harry Potter movies using their wands and spells. The boys are looking forward to going to Double H for a family weekend tonight. I must admit I am too. We’ll be heading out right after their batting lesson. Everyone is excited about baseball this season. I will be coaching once again. I have to find a new assistant/book coach this year. Zach’s dad will be moving up to the next level with him. Zach is already 9 years old.

  The St Baldrick’s Day celebration at the Albany Pump House on 3/22 is coming along nicely. We already have some folks signed up under Ben’s Team – Green Drakkoman’s Warriors. It is nice to have an opportunity to help others in their struggle with childhood cancers and to contribute to the work at Albany Med. If you haven’t made plans come to the event and see grown men cry and women go bald. I will be shaving my head, but, that isn’t much of a sacrifice.

  On the 1st Friday of June at the Fairways of Halfmoon the Elise Donlon Foundation will be holding a golf tournament with Ben as the beneficiary. Elise was a beautiful little girl with a fantastic family that has continued helping others in her honor and memory. I have known her dad, Dave, since I was the boys’ age. Among other things we were in Cub Scouts together. They have been watching over our family throughout this journey and this tournament is a way for them to celebrate Elise and help Ben. If you are interested in participating send us an email and I will forward it onto them – greendrakkoman@hotmail.com and you will receive more details. 

3/3/2009

Ben is very tired today. He didn’t sleep much because he kept waking up thinking he had to pee and it’s really pressure on his bladder. I never quite know where to draw the line when I’m writing this blog. Bathroom talk coming – skip down 2 lines if you are squeamish. He is having troubles with his bowels. We can’t seem to get things right for him. He goes from being terribly constipated straight to diarrhea. Do not pass go. He is also a bit weak. When they went to the clinic today Stacey actually put him in a wheelchair to go through the halls of the hospital. His red blood count was fine, but, his platelets are low. He will be going to the hospital tomorrow to receive platelets. In the afternoon he will be having a CT scan and we will find out how the drugs are working. He is doing a pretty good job of eating. We are giving him whatever he will eat to keep his calories up. We are lucky because he eats eggs so we know we are getting good, easily digested proteins into him. We talked to Dr Pearce about his ups and downs lately and she said that we are really beating his body up with the drugs that we are giving him.

I think that is the one thing that has bothered me throughout the past 2 ½ years. The pain, being sick, losing his hair and all of the other crappy things he has endured have been inflicted by us. I know we are doing it to save his life, but, when the lights are off and I look at him sleeping there I think, “My God, what this kid has gone through. I don’t think I could do it.” Osteosarcoma has stolen so much from his life, our lives, and his friends lives; last year 1200 other kids joined the same fraternity. He is amazingly strong and he always has been. His strength and courage is what has carried and continues to carry us. I was flipping through the channels the other night and the military drama “The Unit” was on. I hesitated for a second and caught this amazing quote. It was like the TV was talking to me. Don’t worry I haven’t snapped yet. A young couple, he is a member of the Unit, is embracing and she says to him in a weak voice, “I’m not strong, what do you do when you’re not strong enough.” He replies in a loving monotone, “Pretend to be strong.”

3/1/2009

  We didn't make it to Double H this morning. Ben came in and woke me up really early. He said,"Daddy, I was thinking that we shouldn't go to Double H today." I asked why and he replied, "Because I thought it was family weekend and James can't go. It will make him feel bad." Earlier this week James asked Stacey if we loved him as much as Ben. We didn't think Ben had heard anything, but, maybe he did. I asked him how he was feeling. He said, "Okay." I told him that his intentions were very sweet and admirable and I suggested that we ask James what he thought. I knew that he and Stacey were planning on doing something together and just having Mommy and James time. He coyly said that he didn't think we needed to talk to him. I was starting to smell something fishy. I asked him again how he was feeling. I thought he was looking a little pale. He then admitted to not feeling well. We finally came up with the term after talking with one of the people at Double H. Ben feels really icky. He has spent most of the day so far just laying in bed. We think his counts are dropping. We have taken his temperature several times and it is fine. So we are having a restful day and using it to do some projects around the house. Stacey is going to bring him to the hospital in the morning to have his counts checked unless he spikes a fever between now and the morning.

  Last night Ben asked if he could have a Twitter account. I asked why and he said that he wanted to be able to communicate with President Obama. "I have some things I need to talk to him about." I pointed out that it was really unlikely that President Obama would have a Twitter account. I also told him that we did indeed have a Twitter account. I had created one for Greendrakkoman to make sure nobody else could. He was thrilled so we will start using it. For those of you who don't know what Twitter is you can check out http://www.twitter.com It is a free service that allows people to post brief messages and have them sent to their "followers." Followers are other people who have twitter accounts who have chosen to follow some one and they receive the messages either via email or text message to their phones. We can post updates from our mobile phone so we won't need to rely on an internet connection and the website fto get brief updates to all of you. I will also use it to send out a message when I update the web site. You can check out Ben's latest tweet without being a member by going to http://twitter.com/Greendrakkoman  If you want the Tweets(Twitter messages) to go to your phone or email you need to sign up for an account. I have it set so people have to be approved to become Ben's followers. By the way if you sign up for an account I would suggest making it private and not using your real name.

2/28/2009

   Last night the Cub Scout Pinewood Derby took place at the boys’ elementary school. The boys had designed really cool cars. Ben had a design with deep ridges on top. 2 years ago he did well with a car that had ridges. Last year I talked them into wedge shaped cars and they didn’t do as well as the year before. Ben brought back the ridges. James did a great deal of shaping on his car. It was fun teaching him how to use a Dremel tool. He did a great job of shaping it. It was very hard for me not to redo it or polish it off. My job in their pit crew is to spray paint them and put on the wheels. I also do the gluing of anything they want on the cars. We use super glue and I usually end up gluing something to my fingers. If I let them use the glue it would be disastrous. That’s right we let our kids use power tools that have sharp, hurty, pointy things spinning very rapidly and we won’t let them use glue. Each year they do more and more of it.

  Okay, enough fluff, it’s time to tell you about the racing. I will be putting together a little video after I get time to take it off the camera and editing it a little bit. Ben was in the second group to race. He was so excited. He was determined to go. Between the chemo on Thursday and the bowel trouble he had spent Friday in bed. He must have been saving up his energy. Every time he was racing he was so excited. Both of the boys get very excited if they actually win. In the first round Ben’s car won every race so he moved up the bracket. The crowd was wonderfully supportive of each; families cheering on their scouts, the scouts cheering for others. Except when Ben’s car was on the track. When the announcer would announce the names of the boys in the next race a huge group would start cheering when they heard Ben’s name. While the cars were being placed on the track the crowd was chanting, “Go Ben, Go Ben, Go Ben” and they usually didn’t stop chanting until he won. Ben’s golden car moved up through the brackets as he proceeded to win every race. He arrived at the finals and there was only one car between him and the big trophy. The silver car that his car had to race belonged to his twin brother James. James had also moved up through the brackets without the cheers. The cars were placed at the start. This time, I think out of respect for James, there wasn’t as much chanting for Ben. Brother against brother. I wasn’t sure if this was going to be a good situation or a bad one. I had watched James’ car and it was really fast. I had no idea what was about to happen. The race started and they both sped down the ramp picking up speed. They were side by side. As they headed towards the finish line Ben’s car took the lead. He won the big trophy. The whole place erupted with cheers. James was conflicted on the one hand he lost. On the other his brother had won and he had taken 2nd. Ben showed great sportsmanship and has given James his props. Mommy pointed out that Daddy had made mistake when he put on one of the wheels on James’ car. So don’t be surprised if James tells you it was my fault that he lost. I didn’t argue because I saw that it gave him a little ego boost. Who knows maybe that little flaw really was what cost him the race. The gold car took first place and the silver car took second. I can only guess what color James will want to use next year. Ben is already thinking about his car for next year and holding on to the championship. One of the dads turned to me just after the race and said “This couldn’t have been a better derby. You couldn’t script this.” I must say I agree. It was like a Hallmark made for TV movie.

2/26/2009

On Tuesday I had my laptop open and was doing some homework. I had just closed the programs when James came walking by. He looked at the picture on my desktop and said quietly with a shocked expression, "Ben used to have hair?" I wasn't sure what he said so I asked him to repeat himself. When he said the words again I could hear the concern and almost sadness in his voice. "Ben used to have hair. I forgot what he looked like with hair. I can't remember him with hair." I showed him a couple of pictures and we talked about it. I let him know that sometimes we remember the moments, events and actions and who was there, but, most people forget the details about the people. I told him that was the reason I was always taking pictures of them. Because I always want to be reminded what they looked like when they were 8 and 6 and 5. After talking for a while (What's a while?) he was ok and we went upstairs and he told his Mom that he couldn't remember Ben with hair and she pointed out that Ben’s hair is growing back now. He may be seeing Ben with hair soon.

We are still talking with Dr Pearce about which would be better for Ben right now - the Cyber Knife or traditional thoracotomy. The big question for us is which will leave him with the most healthy lung tissue. I didn't sleep to well last night. I keep thinking about what we can do to make this all go away. I know that we are turning over every stone. I daydream about giving him my lungs, maybe even switching them. We know that we have been making the right decisions with the best information. Dr Pearce is continually amazed at the resources we come up with. I tell her I just put out the questions to the universe and the internet and see what comes back. Ben is tolerating the chemotherapy very well. The drugs have been wreaking a little havoc with his bowels. He seems to go from one extreme to the other. He has had a couple of accidents. He had one at school and what could have been a traumatizing and embarrassing event was handled brilliantly. It's a good thing the school nurse keeps a fresh supply of clothes in her office. He now carries extra clothes in his backpack.

The cookbook creation and sale seems to be going along beautifully. The kids have done a great job of getting recipes and the teachers have been proofing the recipes as fast as possible. The price is going to be between $10 and $15. I still don't know what the final price will be. If you want to reserve a copy the address is above. I am asked almost daily how people can order the cookbook.

On another note, we have been truly blessed by the outpouring of support and love we have been receiving. We have tried to teach the boys that it is important to give back and share with others. So we are participating in this years St. Baldrick's Day celebration at the Albany Pump House and Brewery on March 22. Ben was asked to be one of the honorees this year so he is featured on the web site and will be used in some of the promotional materials. St Baldrick's is an event where people get their heads shaved to show solidarity with the kids and young adults fighting pediatric cancers. They raise money by asking their friends, "How much money would you give to have my head shaved?" The money is then given to the St Baldrick's Foundation. Because the event is actually sponsored by the pediatric hem/onc group at Albany Med all of the money stays here. Of course I am already follicly challenged so it isn't much of a stretch for me to shave my head. Stacey and James are thinking about doing it. The boys are really funny every time she brings it up. They keep telling her she can't shave her head. It isn't shaped right. James has done it twice now. In the past he decided to shave his head on the day of the event. He even made it onto the front page of the Times Union one year. If you would like to donate here is the link - http://budurl.com/wv33 If you would like to participate in the event as a shavee, shaver or volunteer go to - http://budurl.com/3v8v In order to be a shaver you must be licensed with the state of NY. If you decide to be a shavee make sure you join Ben's Team by selecting Join a Team and the selecting his team - Green Drakkoman's Warriors. You can also join the Green Drakkoman's Warriors by donating at - http://budurl.com/rugk

On March 22nd go to the Albany Pump House and celebrate. It is truly a joyous celebration of solidarity that may leave you bald. By the way they aren't allowed to use razors so it's really just a very, very, very short haircut.

Ben is going snowboarding at Double H on Sunday and we all get to go up there next weekend for a family weekend.

2/20/2009

  There really isn't much to report about Ben right now. His chemotherapy is once a week on Thursday and it is done as an outpatient. It still means that the day is pretty much shot for Stacey and Ben. In fact either I have to come home for James or what is more likely is that one of our wonderful neighbors picks James up at the bus stop. In fact last week I didn't make it to the bus stop because of a late start from work and unexpected traffic. My cell phone rang and it was a relief to see their number on my phone and hear Jess's voice telling me, "We have your son at our house. He's fine, take your time." On Thursday this week James had the good fortune to have Uncle Rick come and stay with him. They had a great time together. I stopped in for lunch. Stacey took the boys to the movies a couple of time, but, overall it was a quiet week. I am not sure what we will be doing over the weekend.

   The blood drive on Tuesday was a big success in our eyes. We asked and they had a great deal more donors than they normally do. I know of at least 3 people who donated for the very first time. I heard a story about one who was very scared about doing it. A couple of folks were really supportive and she, "Did it for Ben." and afterwards commented, "It wasn't so bad." Stacey managed to get Ben and James there for a little while and they thought it was really neat. There were teachers telling folks about the cookbook. I think the biggest hit was the Girl Scout's and Brownie's there that were giving out bookmark's that they made and helping with the cookies.

  Today Stacey took the boys to their hitting lessons. The boys want to play baseball so badly. They also want me to be their coach, but, I am still debating a little about it. I have been asked to coach again so we'll see. We decided that if they were going to play this year they needed some outside lessons on hitting. We may throw in catching as well. I realized that although I seem to be able to have great patience with other people kids sometimes I cannot work with my own. They get nervous because they want to please me so much and then give up too quickly. I don't know how to deal with it and then get frustrated myself. The lessons are going well and today they were both excited to show me what they learned. I will be helping them with their homework. Once they are past the initial stages and have a little bit of confidence we will be back to working together.

  Last week I went to the wake of a little boy. He and his family started their journey last July and we talked in the hallways and at the clinic many times. I met them on an elevator ride I will never forget. He looked so sweet in his stroller and he was having a good day. They were taking him outside for some fresh air for the first time in months. It was a ride of celebration just to spend a little bit of time outside Albany Med. There are bonds that are made with other families that can be both very fleating yet very strong. Sometimes we may only see them for a single visit other times we will see them regularly and really get to know them. I have heard it being equated to being thrown in to a foxhole with someone. I usually say that ,"We have all pledged a fraternity that we never wanted to join." It sure feels like the longest, hardest hell week I've been through. At the wake their family was more concerned about us and Ben. They have been very supportive of us and we talked a little about how throughout this journey that is so dark there are so many bright lights along the way; so many joys to celebrate and fantastics acts of love. 

2/15/2009

  Ben is home now. His x-ray was still showing some gunk in his lungs. He hasn't had a fever in over 24 hours. His counts have been improving although he has had several minor nose bleeds. None of his blood or urine cultures showed anything growing. He will be going into the hospital tomorrow for a clinic appointment. They will check his counts and listen to his lungs. They may or may not order another x-ray. He is still receiving an antibiotic. We switched him from the IV to a pill. I didn't get around to putting in the update because we were having a good time with everyone home. The boys and I watched America's Funniest Home videos together and the 3 of us laughed a great deal. It really is nice to have everyone under the same roof.

  Tomorrow James wants to go with me to work so I will probably bring him while Stacey and Ben are at the clinic. He told me to make sure I bring enough snacks and drinks for him. He also suggested I bring a TV for my office. When I pointed out that we would be at my place of work Ben started laughin and we all ended up laughing again.

  Last Sunday during church school Ben wrote a poem about prayer that I wanted to share with all of you.

Prayer is...

Prayer looks like

Prayer is singing, talking

Prayer is being one with nature

Prayer smells like dogs.

Prayer tastes like food

Prayer is having fun.

               Ben

2/13/2009

  It looks like Ben is going to be in the hospital for at least a couple of days. They have given him blood and antibiotics. They are also doing blood and urine cultures as part of normal procedures. He has been having fevers although he looks good. We are also watching his counts to make sure they do not drop further into the critically low ranges. Last night James and I stopped down to bring dinner from McDonalds and to deliver Ben’s newest action figures. He asked his Mom for the Yellow Gormiti (the Earth Tribe) figures and I actually found them or at least 6 out of 7 of them. I only missed Mole the Holedigger. He was thrilled. It was amusing to see him playing with them on the hospital bed table. James was happy because he received the ones that were paired up with the yellow ones. I also had to bring Caymus and a special pillow case so Ben could sleep. Since he is going to be staying longer I will end up bringing one of his Ugly Dolls down with me this afternoon.

          
   James brought Ben’s homework and Valentine’s cards to school today. They are having parties and distributing cards to their classmates at school today. Ben and his Mom filled them out while they were at the hospital. Since she had James’ cards with her they did his too. James did his homework last night when we arrived home and was great this morning about getting ready for school. He is a really super kid. James was very funny this morning. He asked, “Are you going to be getting Mommy something for Valentine’s Day?” I told him that I really hadn’t thought about. He pointed out that I should. When I was dropping him off at school he reminded me to pick something up to give her on Valentine’s Day.

         
   On Wednesday night when I was putting the boys to bed James asked a question completely out of the blue. He asked, “What if Ben dies from his cancer?” Ben who was buried under the covers immediately said, “Daddy he is creeping me out.” I told Ben that it was ok for James to ask the question. I answered James by telling him that we were doing everything we could to keep that from happening. I said, “Ben is receiving chemotherapy and we are working with the best doctors in the world to get rid of the cancer. A meteor could come out of the sky and hit the house. We don’t know when or how anyone is going to die. That is why it is really important to live life as best we can every day and every moment.” I think I said some other things and then I asked if they were ok with my answer and they both replied yes. Like most conversations with 8 year olds we then immediately moved on to other topics like super heroes, comic books and TV shows. Last night he really wanted to go see Ben and give him the toys. 

 

2/12/2009

   Ben is at the hospital today receiving his chemotherapy. He is also receiving a unit of red blood and a unit of platelets. The cough that had been a little scary for us went away after I started using the humidifier in the boys’ bedroom at night. The other day we noticed it was coming back. The doctors listened to his lungs today and it sounds like he may be developing pneumonia in one of his lungs. He had an x-ray and it confirmed the pneumonia. The boys were looking forward to Cub Scouts tonight. We have to see if James is going to be able to make it to the meeting. He is getting IV antibiotics right now. He is being admitted for an overnight stay. He has a fever and also has the rigors. He still needs to receive 2 units of red blood cells. They want to keep an eye him.

             
   It is so hard to decide how much to limit his exposure to the outside world. We try to ride a fine line by watching his counts closely and gauging which activities are likely to create exposures. One thing we have seen is how protective other people are of him. One Sunday he insisted on going to church when his counts were low. I told him he could, but, he had to wear a mask and stay away from anyone who looked sick. After church someone came up to me and said, “You know if he doesn’t want to wear a mask we can get the whole congregation to wear them.”

                    
   On Sunday Uncle Rick and I took Ben and James to see Siena College’s Women’s Water Polo team play in their last scrimmage before their first game coming up this weekend. The scrimmage was a against a local club team called Adirondack. It is a coed team mostly comprised of men. It was a great game and the team did really well. When we walked into the pool area, just before the scrimmage, several of the women shouted, “Ben!” A couple of them weren’t suited up for the game and they came over to talk with the boys. After the scrimmage the whole team took us to the cafeteria for dinner. It was amazing to see these young women reach out to the boys and just talk with them about all kinds of things. The “all you can eat” ice cream and Slurpies were big hits. At one point it was like the boys were holding court at each end of the tables. James was trying his best to make them laugh at our end of the table and Ben was just talking away at his end. If I didn’t know better I would have thought Ben was putting the moves on a couple of them. I guess 2 of them offered to be his Valentine and he told them he could only have one real Valentine. Uncle Rick made a comment about them being, “True Stowell boys.” I pointed out that I was never that good with the ladies. I don’t want to break any hearts so I’m not going to tell you the rest of the story right now.

    
    Many of you have been asking us about the cookbook that the entire 3rd at Blue Creek is putting together for Ben. I am not sure where the idea came from, but, the kids seem really excited about it. I have heard several cute stories about the children working with their parents to come up with recipes. The last time I checked there were close to 200 recipes. The deadline(2/20) is tight so the books can be received before Mother’s Day. The best way to submit the recipes is via the web. Go to http://www.morriscookbooks.com and select “typensave ONLINE” on the right hand side of the page. Select the “login” button and a login screen will open. In the Contributor line put your name as you will want it to appear in the cookbook – i.e.“Stowell Family””Ben Stowell”. The Group Login is bluecreek and the password is hmu5a at that point select ADD Recipe and the rest is self explanatory. If you wish to purchase copies of the cookbook there is a form in the information on the events page to send in to the school. The final cost of the cookbook will depend on the size of the cookbook and the number ordered. I will put all the information that I have on the Events page of this site tonight so it is easily accessible.

2/10/2009

On Thursday we spoke with Dr Pearce about the PET scan results. I am sorry to keep you all waiting, but, we wanted to talk with Dr DeCaprio on Monday about the boney bump we were seeing on Ben's right shoulder. It turns out that the boney bump is actually part of his shoulder/scapula that is protruding because of his muscles compensating for his range of motion issues. The original limb salvage surgery coupled with the subsequent surgeries has removed some of his muscle tissue and is other muscled are compensating. We can try to do physical therapy, but, it is possible that his shoulder muscles could loosen up to much and he could lose muscle movement in other areas or develop stability issues with his shoulder.

The PET scan showed a total of 10 tumors in his lungs. In a relatively symmetrical fashion there are 5 on each side. The largest is 1.3 centimeters or about the size of the tip of your finger. A second one is slightly smaller than the first. The rest are from 1-3 millimeters. A millimeter is about the size of the diameter of a toothpick - the frilly sandwich ones. We gave Dr Pearce all of the information that we have on the Cyber Knife and AMC is reaching out to the doctors at Boston Medical Center to see if Ben can get the treatment there. We don't think there will be an insurance issue because it is supposed to be cheaper than another bilateral thoracotomy. He has started the new chemotherapy and it has lowered his blood counts. On Friday he received 2 units of red blood and 1 unit of platelets yesterday.

He is absolutely amazing. Stacey and I were up late last night and neither of us is sleeping really well. I was awakened this morning by Ben standing at the foot of our bed shouting, "Wake up everybody. Rise and shine." I looked down and there he was completely dressed with his coat and hat on ready to go to school. He even had his backpack on. He had even made himself breakfast. I made him take off his coat because the bus didn't come for 20 more minutes and we usually drive him anyway so we don't leave for 30 minutes. He really wanted to take the bus. I told him that I would drive him because we didn't want him to take the bus to school. In a stroke of logic he made his case, "What is the difference between going to school on the bus and coming home on the bus. You let me come home by bus most of the time, unless I have to go to the hospital." I looked at him and said, "Are you sure you aren't a lawyer? You make a very good case." He ended up taking the bus today and he was thrilled to be heading to the bus stop with his friends. I drove James to school because he over slept like the rest of us.

When Ben and I opened the door there was a surprise on our porch. Someone had left 2 Dunkin Donuts coffees on our doorstep. Let me tell you, when you oversleep and are rushing to make things happen it is a really nice turn around for your day to find fresh hot coffee on your doorstep. We are not sure exactly who it came from because there was no note. We are pretty sure we know who it came from because we only have a few regular morning visitors. Thank you...The coffee turned around a day that was heading downhill. Of course I have a thing for knowing where my food comes from so I made Ben test the coffee to make sure it wasn't poisoned. I'm only kidding Ben doesn't drink coffee. I let Stacey sample hers first.

Over the weekend I shared the news of Ben's tumors with my sister and she pointed out something to me. She said, "You know this isn't the first time things haven't looked really good. Every time you guys have found some new treatment or drug. You keep finding something new to try. You keep coming up with choices or they present themselves." I agreed. We also received an email from one of the Moms whose child is a fellow osteosarcoma warrior in reply to my posting to the ACOR email list about Ben's situation. In it she wrote, "Wherever your journey takes you and Ben I don't doubt that you will continue to be an inspiration to others. I pray you find the answer you are looking for. For me and (my Daughter), it came when we were just about to give up."

The 3rd grade class at Blue Creek is putting together a cookbook to help their classmate. It is going to be a collection of family recipes. I will post the information on the events page. It is a really nice idea and I understand that many of the kids have been helping their parents pick out and create the recipes. Ben wants us to put his cinnamon toast recipe in it.

2/4/2009

 Ben is doing well. Although, he has a cough that hits him mostly in the morning that scares the hell out of both Stacey and me. We believe that it is mostly from the dry air in the house and his perpetually runny nose. We have started to give him Sudafed at night and I am going to set up a humidifier in their room tonight. Humidifiers scare us a little because his immune system is up and down we don't want to encourage molds. He feels great and is a typical 8 year old boy enjoying potty humor with his brother and friends. We will be meeting with Dr Pearce tomorrow to discuss the PET scan results and next steps. We want him to have the Cyber Knife procedure to kill the tumors in his lungs.

We have had a couple of encounters that I would like to share with you. Last week I took Ben to Barnes & Noble bookstore because he wanted to use a gift card to buy a book on the Ugly Doll's Uglyverse. He asked for help and a nice woman helped him find it. I picked out a book for myself and we headed separately to make our purchases. The beautiful young woman who was taking my credit card looked at Ben who was obviously with me, but, being helped by a young man near us. She leaned forward and quietly said to me, "I'm a childhood cancer survivor. Stay strong. He looks wonderful." I thanked her as we completed the transaction. Ben was done first and came back to me. I told him I wanted him to meet someone. She looked to the other young man quickly almost to make sure he wasn't in earshot. She leaned forward and whispered to Ben, "I'm a childhood cancer survivor. I just wanted to say hi and let you know there is life after cancer." He thanked her and told her with a big smile, "I'm going to be a survivor too." As we headed to the door he started to skip. He was thrilled to have his new book.

The last time we went to Friendly's the four of us were sitting there talking and waiting for dessert. Our plates had just been cleared. I had noticed a man take interest in Ben when we were being escorted to our table. He was there with his family. He looked at Ben in a way that was not typical of the way strangers often check him out. There was something in his eyes that really made him stand out. I can't put my finger on it. It was a mixture of surprise, love, awe, empathy and kindness. He was definitely a man who works hard to make his living and support his family. I was sitting with my back to the man and his family. I noticed Stacey look up over my shoulder like someone was coming up behind me. Before I could turn and look I saw a pile of 4 Friendly Valentine's Day ice cream gift certificates appear at my right elbow and a man's voice whisper, "Bless you." in my ear. I was a little dumbstruck and before I or Stacey could say anything he was gone and out the door.

We are often blown away by the kids who go to Blue Creek. Ben missed several days of school last week. When he is not in school the kids in his class really miss him. If he misses 2 days in a row they worry that he is going to be out for a while again. When I drop him off in the morning after an absence kids will often stop and wait to walk into school with him. On Sunday Ben received an email from one of them. It was obvious that the email was not instigated by his parents. Parents who I might add must be very proud of their son. I have personally witnessed this young man's care for both Ben and James. He is a good friend to both of them. Danny is aware of the blood drive that the Latham Fire Department is having in honor of all of the blood Ben has received. Here are the words of an 8 year old friend:

Hi Ben,

I hope you are feeling good, and come back to school soon. I
miss you. This is a picture of me playing guitar hero. When your
feeling better you can come over and try it, it is really fun. My
favorite song to play is "No sleep till Brooklyn". I like watching
the video of you in New York City. My mom and dad said "Hi Ben get
better soon." I hope you get a lot of blood at the fire house. I have
a lot of blood I could give you. I can't think of anything else to say
for now. Bye.


Your Friend
Danny.

.

1/30/2009

  A quick update to let everyone know what's going on with our family and Ben. The PET scan today went wonderfully. Ben did a great job holding still and dealing with receiving the contrast fluid via and IV needle that they had to put in. He really hates them and he was very brave. We will not know what the results are until next week, but, we will have a great time this weekend. Tonight Stacey and the boys are going to Family Bingo Noght at Blue Creek and I am going to a fundraiser for the Leukemia and Lymphoma Society - a wine tasting event called "A Taste of Compassion." It will be nice to see Dr Pearce at a more social event instead of in the clinic.

  We are planning on doing more snowboarding this weekend. Ben, James, Uncle Rick and I are heading to Willard Mountain tomorrow morning for a lesson. After that we may be going to a monster truck event in Albany. I have to check on the seats, Ben, has a hard time if the seats are in the upper sections. On Sunday Ben is heading to Double H Ranch for more snowboarding. James may or may not be heading north with us. We will let him decide.

1/29/2009

   Ben received his MTP today and started the Gemcitibine. We are going to add the new drugs one at a time to watch for reactions to them. He has the PET scan scheduled tomorrow. We were joking that the scan started with a hamster and moved up to dog. He requested that no reptiles be used and we all chuckled then he looked at me and said, "Really...They don't really use animals do they." We all laughed as I affirmed that they did not really use animals and that it was more like a cross between an MRI and CT scan. When they told us he had to lay perfectly still for 28 minutes and he replied, "I can do that. I did it for 2 hours...twice for an MRI."
    
   I just got off the phone with the Red Cross. She was thanking me for allowing the Latham Fire Department to hold a blood drive in honor of all of the blood that Ben has received throughout these past 2 years. She asked how much he has received and I answered, "I have no idea. I lost count a long time ago." She said, "You know it's a lot when you stop counting." Here she was, thanking me when I am the one who really has the reason to be thankful. Every time Ben has needed blood it has been there for him. I know that some of you have given blood in his honor before and we are grateful. If you have and the timing is right please considering supporting the Latham Fire Department in their efforts. If you have never given blood before and are over the age of 16, in good health and have been thinking about donating blood this would be a good excuse. The Blood Drive will be held on February 17th from 1-6 PM at the Latham Fire Department - 226 Old Loudon Rd. You can register online at http://www.donatebloodnow.org/DonateBlood/Listings.asp?co=Albany or by calling Diane Burega @ 518-785-8194. The woman from the Red Cross assured me that they will have the staffing there to accomodate everyone who wants to donate.

1/27/2009

 Spending the day at Double H was wonderful I totally enjoyed my time with Ben on the ride both ways and during the day. We had lunch together, but, most of his time was spent on the slopes with his instructors. The lessons started at 10am and went until Noon and the started back up at 1pm and Ben came of the mountain a little before 3pm. His instructors told me that although he was a little bit melodramatic a couple of times they have rarely had a student as determined to learn. He wants to be able to snowboard and it showed. When he came off the mountain for lunch he couldn't wait to get back outside. Double H is going to try and get him on the mountain as many times as possible this winter. We have 4 more trips scheduled. They are also trying to get us up there for more than 1 family weekend so James can go to. We are on the cancellation list so if a family can't make it we will be able to go. Ben's goal this winter is to be able to snowboard down the Double H hill under complete control and completely on his own and with James. Ben's instructors at Double H were wonderful. Greg is the head of the snowboarding school at Willard Mountain and Sevita is the head of the Winter Sports program at Double H. I didn't take too many pictures because I turned out to be a major distraction for Ben. We are going to try to get the boys snowboarding every weekend. The trick for us is getting James the lessons and time too. I talked with Greg about bringing the boys to Willard Mountain on Saturdays for individual lessons. The double H days are on Sundays. The big issue for Double H is that they need more snowboarding instructors. They provide all of the training so all the instructors need is to be experienced snowboarders or skiers.

While Ben and I were at Double H James and Stacey were at the Arts Center in Troy. James participated in a dance and movement class based on the Harry Potter stories with Ellen Synapoli and the Eleen Sinapoli Dance Company. He had a wonderful time and really enjoyed participating the movement and dance. He was the only boy in the class so he is a liitle self conscious of his interest in the class. Stacey told him that his father really always wanted to be a modern dancer. James and Ben both have been growing so fast I don't think either of them is really comfortable in their bodies so it is wonderful to see them participating in things that keep them moving and developing bapance and coordination.

Ben had his MTP infusion on Monday and will be getting the MTP, Gemcitibine and Taxatere on Thursday. On Friday Ben will be getting a PET scan so we can then lookk at the extent of his lung mets and plan for the treatment/removal of them. On the outside Ben is just a really tall 8 year old boy. He runs, plays, dances and snowboards without even tiring quickly now that his counts are getting into the normal range. Today he proudly brought his favorite ugly doll into school to show his teacher. The boys love these ugly dolls and have even read the books ont the "Uglyverse." Unfortunately Ben learned the 2+2=cookie in the uglyverse and used that knowledge of math in the uglyverse on one of the questions on his last math test. We had a dicussion on bringing the uglyverse into our universe.

1/24/2009

  Yesterday was a pretty normal day. The boys went to school, I went to work and Stacey worked at home. Friday night was the "Family Dance" at the boys elementary school. It is sponsored by the PTA and the parents are mostly wall flowers while the kids mostly run around with a litle dancing and conga lines thrown in. It was wonderful to see the boys interacting with their friends. We spoke with many of the parents as they absolutely marvelled at Ben. It was hard to say which made him stand out in the crowd - his bald head or his dress shirt and tie he insisted on wearing. There is literally no outward indication that there is anything going on inside of him. His counts are a little low so he is slightly pale, but, nothing noticable. The support of our school community is wonderful

  Today I took the boys to Jimminy Peak and they took a first day 1 1/2 hour lesson on their snowboards. Let's just say they spent most of the time with their butts on the snow. Neither boys was that successful, but, their instructor told me that Ben really worked hard and never gave up although he was a little dramatic at times. James lost complete confidence in himself at one point. I saw him on the hill with his head in his hands so I investigated. After a little while he decided to give it another try and he pulled himself back up and finished the lesson strongly. He was very proud of himself and so was I. We really had a great time and I will post some pictures after our adventure tomorrow. When we arrived hom we found out that there is a space for Ben at Double H tomorrow for more snowboarding so we are heading up there furst thing in the morning. James and Stacey will be going to the Art Center in Troy for a Harry Potter Creative Dance Activity with the Ellen Sinapoli Dance Company. When the boys came in from the lesson Ben immediately said to me, "That was one of the best things I've ever done in my life." He is hooked on snowboarding. The joy was evident on his face. We will probably be going back next week.

1/22/2009

   We spent the day at the hospital. Ben received his MTP treatment and we talked a great deal with Dr Pearce. She had not heard back from one of the osteosarcoma experts I mentioned yesterday. The other one offered some good advice and will be going through Ben's case in great detail. One of the 2 doctors is in NYC at Sloan Kettering and he was Ben's oncologist when Ben was at Sloan. Ben is going to continue to receive the L-MTP-PE. He is currently receiving it twice a week. In the next couple of weeks it will be reduced to once a week. We have decided that 3 drugs will be added to his chemotherapy. Gemcitabine (Gemzar) is one of the drugs he will be receiving. He has received it before and didn't experience any side effects. The 2nd one is Taxatere. It was originally created to treat breast cancer. I searched the internet and very quickly found several folks who had positive results with this combination. The 3rd drug Ben will have added to his chemotherapy is Avastin. There have been some questions about the efficacy of this drug as a treatment on its own. It has showed to be effective in combination with other drugs. It works well on very small mets by effecting the way oxygen flows to the cancer cells. We like it because we call it the pirate drug - "Avast there matey." By the way avast means halt or hold - stop what you are doing. We may change the cocktail a little bit pending the input of the experts Dr Pearce is reaching out to, but, that is the chemotherapy plan for now.

            

   The next issue is what do we do with the tumors that are in his lungs now. First he will be having a thorough PET scan next Friday. He has scar tissue from the surgeries and his CT scans are getting harder to read. One of the ways they tell what is what in the images is to compare them with previous images and look for changes. They also use their knowledge of images and what tumors and scar tissue normally look like to differentiate. We will have an even better idea about the extent of the tumor presence within Ben's lungs. The PET scan will enable us to truly plan the method of removing/destroying the tumors in his lungs. Ben does not want to have a bilateral thoracotomy right now. The only difference between the operations he has already had and the surgery in Germany is that they use a laser instead of a scalpel to remove the tumors. He would still be opened up and have chest tubes and a catheter. We have decided to seek an alternative for now. We are still getting our passports just in case. We have looked at traditional radiablation (radiation treatments) and that has risks of lung pneumothorax(localized collapses of the lungs) and damages healthy tissue. Cryo-ablation involves freezing the tumors, but, that is still somewhat experimental and carries some of the same risks as the traditional radiablation. We have decided to pursue a new radiation treatment called Cyberknife. It uses a low level radiation beam that passes through the healthy tissues and focuses on the tumor. By shooting numerous beams from different directions only the tumors get the high doses of radiation. Computers track the tumors and allow for breathing movement of the tumors and follow the target. A member of our church first called this technology to my attention. It has matured some since he first mentioned it to me. It is more accepted and there are more machines available. We will probably be going to Boston or another teaching type facility because they usually have more experience with newer technologies.

                 

  We have a plan. We have alternatives. Although the news is a kick in the teeth we are not out of the fight. Ben's spirits are high and he appreciates that we have involved him in the decision making. Now we just have to confirm that the Cyberknife is appropriate for the types of tumors that he has in his lung. We also have to make sure there is space available for his treatments. We have not gone down the road to see if our health insurance will cover it. We will cross that bridge when we come to it.

                   

  We want to thank all of you. Many of you spent a great deal of time researching potential solutions for Ben. The Green Drakkoman truly has a team the size of an army in this battle. We have hope. We have options. Ben is strong and chooses every day to live life to the best of his ability and to be a normal child.

1/21/2009

  Ben had his CT scan and the staff made sure that everything was as perfect as could be to get the best images with contrast and without. I was even allowed to stay with him in the room with my lead apron on. He was brave as usual and remained very still in a position that had to be uncomfortable. Before the scan while we were waiting in the room Ben had the chance to see some of his friends who work in the radiotherapy department who irradiated his lymph gland area. He really enjoyed visiting with them. After the scans we went upstairs into the clinic to have his port-o-cath de-accessed and await the results. Dr Pearce came in and gave us the news. The osteosarcoma is back. He has two tumors, one on each side that are the size of an adult little findernail. There are several other smaller tumors on each side. Ben listened and was very concerned about having another bilateral thoracotomy. He doesn't want chest tubes or to be catheterized again. We explained that we would cross that bridge when we come to it. She also recommended that we stop the ifosfomide because it doesn't seem to be working any more and it is really taking a toll on him. We agreed. We will be adding 2 or 3 additional drugs to the MTP to try to halt or slow the progression and growth of the tumors. I am currently researching alternatives to the bilateral thoracotomy. We have the laser surgery that is in Germany that I mentioned last time. We also know about a technique called Cryoblation that is done at Johns Hopkins. I have also heard about a tool called the CyberKnife that sounds interesting. Dr Pearce is consulting with some of the best osteosarcoma specialists on the planet to see what she can find. Other than his concerns about the surgery Ben seemed to take it very well. Ben left the room to go play with Toshiko in the playroom. Stacey broke down as she asked Dr Pearce the question that everyone is afraid to ask. Dr Pearce just said, "It's not good. We still have options, but, we aren't in a good spot. It hasn't responded to any of the normally used protocols." Dr Pearce put her arms around Stacey and just held her. I just sat there numb. Stacey gathered her composure and brought Ben home and met James after school. She ended up taking them to their guitar and drum lessons. I cried my way back to work.

 After work we took the boys to a hurried dinner at Friendly's. I dropped of Stacey and picked up their friend Cameron and took the 3 boys to Noogieland. They had a great time. It was really nice to see them laughing and playing. It was talent show night and everyone came up with something to show off. After we arrived home the boys got ready for bed. Stacey asked me if I told James. I hadn't so I went downstairs and sat next to the boys on the couch. I asked Ben if he had talked with James about the news we had received at the hospital. He said no so I looked past Ben to James and said, "James I want to tell you what happened at the hospital today." He looked up from his super hero book and said,"Ok, go ahead, I'm listening." I said calmly and with a strong, natural voice that surprised me, "James, Ben's cancer is back..." As soon as the word cancer crossed my lips Ben jumped up and looked at me with a look of shock that turned turned to one of terror and tears as he started to shout, "What do you mean it's back? It can't be back...I'm going to die...I don't want to die ...You said they were tumors. Not again. I don't want it in me any more. Get it out! Get it out! Use lasers. Do something! Make it go away!" As this was going on James offered to give him a hug. Ben ran past him and away from me as I followed him. He continued to repeat himself and turned to me and said sharply, "I'm going to bed." Stacey was in the boys bedroom turning down their beds and heard Ben as he ran up the stairs. In one of the most amazing feats of emotional strength I have ever witnessed she calmed him down as we both apologized saying we thought he understood the situation this afternoon. We explained to him that we had a plan and that we would follow through on that plan. Stacey said many things that I can't remember. She told him that every one dies, but, that right now wasn't his time. She told him it was ok to be afraid and that we were doing everything we could to get rid of the osteosarcoma. I stroked his back as she held him. We wiped away his tears and he quieted down. He lay down and held his favorite Ugly Doll. He asked us to come up with something other than the thoracotomy. James walked into the room with his arms outstretched and said one word to Ben in a very cute, loving way, "HUG!" Ben smiled. Stacey read to the boys and we talked about Noogieland. Before long Ben was smiling and we even caught a laugh or 2 before they fell asleep.

  On the outside this beautiful little boy with one of the noblest souls I have ever met is a picture of health and vitality. On the inside this brave little boy's body is being quietly undermined by an insidious monster - osteosarcoma. 

Thank you all for your prayers and kind thoughts.

1/20/2009

1/19/2009

1/16/2009

1/14/2009

   Last night was Noogieland night. The boys absolutely love that place. It is hard to believe that we have been going there for a little over 2 years. Ben really wanted to go, but, it starts at 6 PM and he was due to receive the IV antibiotic infusion at 6. Stacey offered to bring him over after it was done, but, he didn't want to show up late. They usually do circle time at the beginning of the night. Circle time is when they all go around the room and talk about their week and answer a question. It's a key part of the program - the rest is mostly play or activity time. So I packed up the infusion pump, IV pole and drugs and planned on setting him up when we arrived at Gilda's Club. I explained that if any of the kids were upset by it or if there were any objections at all we would find another room for him to get his IV antibiotics. He agreed and was just thrilled to be going. When we arrived I asked the program coordinator if she thought it would be ok. She sad, "We'll find out. Go ahead and do it we'll address any issues if they come up." I hooked Ben up in another room and he went and pushed the pole into the room where the kids were going to have stories read to them by the local Junior League. He was a little disappointed to not be sitting in a bean bag chair like the other kids, but, loved it. I sat outside the room waiting for the pump to beep. I had my alcohol wipes, saline and heparin flushes to use to disconnect him. As soon as it beeped I went into the room turned him away from everyone and disconnected him. The woman telling the story never missed a beat. I did notice that one of the kids seemed a little upset by Ben's IV pole. She stared at it and him a little. I also saw her leave the room when I was disconnecting Ben. I asked the program coordinator and she said that one of the kids had a reaction to the situation with Ben. She talked about how the pole reminded her of her mother and she opened up for the first time about her mom's battle and her feelings. The coordinator said that bringing Ben's IV to Noogieland turned out to be a good thing. I actually thought what a testament to the program and the kids there that Ben felt comfortable enough to be connected when he was there.

          

   Today the boys are at school. Stacey will go and pick Ben up and bring him home for his next antibiotics IV. Tomorrow he will go to clinic for his MTP treatment and to get his blood counts checked.

1/13/2009

   

   On Sunday Ben was released from the hospital. We are giving him IV antibiotics at home every 6 hours. He is very enthusiastic about going to school. I think his enthusiasm is rubbing off on James. The boys are at school today taking their standardized tests - ELAs. We explained to Ben that he shouldn't worry about them and just do the best he can. The tests aren't testing him they just want to see how he is doing and the test is really for the school. On the ride home from the hospital Stacey and I were talking about a number of things regarding life. The boys were having their own discussion in the back. One of the things Stacey and I were talking about was employment. It seems that several of our good friends are have lost their jobs recently because of the economy. We talked about how retirement was disappearing for our generation. I told her that my plans are to retire and that I would want to do some consulting, create art, work in the non-profit world. I definitely think that I will be working until I can't and then the boys will take care of me. As we were talking Ben asked, "Are you guys talking about retirement?" I replied, "Yes Ben." He immediately added, "Don't forget the Bingo. You have to play Bingo." As we started to chuckle James added, "And Bowling, too...Hey, how come we haven't gone bowling in a long time." I almost replied, "Because we haven't retired yet." instead I told him that "We should definitely go soon."

        

    Yesterday Ben had his scans to see how he is doing with the new treatment. Stacey arrived at the scheduled time of 7 AM. I stayed home with James and brought him to school. Apparently although the hospital schedules CT scans as early as 7 AM the outpatient CT scan personnel doesn't arrive until 8AM. Ben was scanned sometime between 8 and 8:30. After bringing James to school I headed down to the hospital and met Stacey and Ben in the clinic. Ben's counts are still really low, but, he didn't need platelets or red blood. His ANC is 100 so he is still on the IV antibiotic and will continue to receive it until at least Thursday. When his ANC hits 200 he can stop receiving the antibiotic. Some parents would keep Ben home, but, we just can't bring ourselves to isolate him that much. He loves school and seeing his friends so much. We also know that James is being exposed to the same kids at school so he will just bring it home anyway. As we waited in the clinic the doctors checked him out and he received his antibiotic, MTP, and fluids. Dr Pearce showed Stacey the image and there were 2 spots the size of the tip of her pinky - one on each side. There was also some haze in the lungs. Dr Pearce explained to us that with him just having a fever and the images being less than stellar that we shouldn't be worried about it. She would schedule another CT for him next week. She also stated that she had had several other patients recently that presented things similarly and the artifacts turned out to be inflammations and they were gone on the follow up CT scan. We also heard of that happening on the ACOR osteosarcoma email list we belong to. Last night Stacey asked me what my "Read" of Dr Pearce’s talk with us was. I told her that I felt Dr Pearce just didn't know. The information was not clear enough and that she just couldn't give an answer based on the information at hand. We need to let Ben's lungs clear a little and get a comparison image for better information. Stacey said, "But, what did I think she (Dr Pearce) was thinking about Ben and..." I replied, "We got to see Dr Pearce the mom not the doctor. The intellectual, analytical part of Dr Pearce didn't have enough information so she fell back on the emotional, caring mom part of herself."

             

      After putting the boys to bed last night I came downstairs to see what Stacey was up to. I found her sitting on the couch with the computer in front of her. Her eyes were teary and I could tell she had been on the verge of crying. I thought maybe she had been reading about one of the other kids we know who are going through difficulties. I asked, "What have you been reading?" She answered, "Nothing." I knew immediately where her tears were coming from. I walked over and just touched her and said, "It's going to be ok. We are doing everything that can be done. We are in good hands. We just don't know and have to focus on the positive." The only thing to do with those tears is to let them come and get them out of your system and then move on to something to either distract your mind or make you happy. Stacey and I talked a little bit about how much osteosarcoma has stolen from Ben and our family. We have completely lost the ability to plan things more than a few days ahead that require a definite commitment. The boys were supposed to have several play dates with their friends over the holiday vacation and we spent most of it with Ben in the hospital. We were caught up in the routine of me working during the day and spending the nights at the hospital, Stacey being in the hospital with Ben during the day and running the house at night. We never managed to get James to any of their friend’s houses for the play dates. Stacey and I totally dropped the ball. All we had to do was call people and James would have been on his way - picked up and delivered. The past 2 years have been a siege and Stacey and I are showing signs of wear.

1/10/2009

  Ben's counts are coming back up. His platelet count is 27 and his white blood cell count is .4. He is doing well and his count recovery should speed up. It is often the wait for the curve to change to a positive direction that is the hardest. The sign on his door states that masks are required for those with cold symptoms and hand washing is required. If he he keeps improving he will be home tomorrow with us doing IV antibiotics at home. James opted to go to the hospital with Stacey so he could spend time with Ben. He also didn't want to help me finish cleaning out our storage shed. Time to make one more bill go away as we continue to try and simplify life.

Here is the link to a first stab at a video for a song that was recently sent to us by Suzanne Sherman Propp -

                                      http://www.youtube.com/watch?v=W_fPV5Xcy24

1/9/2008

1/5/2009

  The Ifosfomide and Etoposide treatment went well. He ate and drank enough to keep his energy up. New Year's eve he stayed up until almost 3 AM. We actually violated the visiting hour rules and had a small party in the room. Everybody left just after midnight with the exception of me. We welcomed in the new year in another room that didn't have any patients in it with the nurses. It will be one of my most memorable New Year's celebrations. As I watched James and Ben blow horns and Ben shake a noisemaker with the nurses I thought back over the year. It was only 6 months ago that I was looking on helplessly as he seemed to be slipping away. We had seen so many tumors in his lungs that there were too many to count. He was inoperable. We rushed to complete his Make-A-Wish trip. I was terrified that we weren't going to be able to get him back home from San Diego. Stacey was confronted with a request from the doctor in San Diego to sign a DNR form. A request that she refused and did not share with me until we were back in Albany to protect me. A burden she chose to bear alone so I could be there for James knowing I would have been devastated. We threw the most agressive chemo at him and it nearly killed him. Instead it worked on the cancer and he was declared operable. The tumors were removed. We found a cancer drug trial that is the first new treatment for osteosarcoma in 20 years - that is almost half my lifetime. To see him running down the aisle of our church to get communion or blasting through the doors to get to school you would never know the war raging inside him. Only his baldness gives it away. We have learned as a family to take things one day at a time. It sometimes frustrates others when we will only make plans tentatively. 

  Next weekend our tentative plans are to take the boys to Double H Ranch for snowboard lessons. During the summer of 2006 Ben had told me that he wanted to learn how to snowboard that winter. I promised him I would make it happen. James decided he wanted to try it too. We made plans to go as a family with Stacey keeping us a place by the fire in the lodge. Then our world was rocked in September. In the hospital Ben met an older boy who was a snowboarder. He shared tales of sliding down the mountain and offered to teach Ben when they were both better in the winter of 2007. Unfortunately Bryan passed away before the winter of 2007 came and we blew our budget to go to Disney World celebrating Ben's NED. This year Ben and James are going to snowboard. Ben has waited 3 years to fulfill this dream and they even have their own Burton boards.

  As we enter into 2009 we are thankful to have 2008 under our belts and behind us. Although there was darkness in 2008 there was an even greater amount of brightness and light. We have found strength in our friends and family. We have been blessed with so many great people that we may never have met. We have had wonderful experiences and continue to grow as human beings. The children and families we have met remind all of us to not take life for granted. When I came down from the bedroom this morning Ben was already dressed with his coat on saying, "Come on Daddy. Are you going to take me to school? It's time. It's time." I pointed out that they didn't unlock the doors for 20 more minutes. Ben looks for the fun and joy in everything...even a grumpy dad.

12/27/2008

    Ben is in patient and his first night was uneventful. We are having a little bit of a hard time getting him to eat and drink. I reminded him this morning that the last time he stopped eating and drinking he had a great deal of difficulties. We are basically asking him what he wants and getting it. Once he picks something he has to eat it. His spirits are good and the nurses and residents are amazed at how much he has grown since they have seen him. It has been a few months for some of them. He and James have actually grown a little over 6 inches since Ben's diagnosis. We also commented with the nurses that we have seen several of them give birth and I think one of them may be pregnant with her 2nd. One of the residents graduates this spring and Ben was one of her first pediatric patients. She is a 3rd year resident that we absolutely love.

12/25/2008

  The last two days have been magical. I hope all of your holidays are going as well as ours has. Stacey and I stayed up late getting everything wrapped and set up. The magic worked when the boys got up. They waited patiently upstairs while we set up the video camera and added a couple of more presents to the pile. The best part was spending the day with our family playing with many of the toys the boys received. I actually managed to get a couple of surprises under the tree for Stacey.

  Tomorrow Ben will be going to Albany Med to receive his second round of MTP. After that he will be admitted to start receiving his Ifosfamide. The Ifosfamide will be given to him over the next 5-6 days. We are actually looking forward to being at Albany Med instead of Sloan. It's a little weird to be looking forward to being admitted to the hospital. We are comfortable with knowing we have an established routine. Several of the boys friends have planned play dates over the schools vacation. Ben will also be receiving some tutoring and with the school vacation Ben will be getting some visitors. We should also have great views of the New Year's Eve fireworks in Albany.

12/22/2008

   I woke up early this morning and checked on the boys. At 7 AM I gently woke Ben up by rubbing his back. He popped up quickly saying, "What time is it? What time is it?" He was almost crying as he said, "Am I too late? Am I too late?" I calmed him down and said everything was ok and that he would be on time for school. I went to go get myself started and to get breakfast moving. I came back to check on James and Ben. Ben was completely dressed and ready to go. I gave James his clothes and he started. Ben was on fire to get to school. I have never seen him so excited. He was in the car before James and I even had our shoes on let alone our coats, hats and gloves. Ben was thrilled even made rock hands as he went out the door. I heard later that the kids were surprised and thrilled to see him. The day went well. He has a great deal of catching up to do, but, we are in good hands. He will be working over the Christmas break on it. Monday was a great day.

          

    I wanted to tell you a story about a breakfast that Ben and I shared together in NYC at the Star Diner. As we ate Ben looked at m across that table and told me he had something serious to talk about. He looked me straight in the eye and said, "Tell me the truth about Santa. Does he exist? Is he real?" My immediate thought was, "Why couldn't he have asked me about sex?" Even Mrs. Satterlee couldn't help me with this one and I wondered if Stacey had told him at some point to "ask his father." As I was thinkinking about my answer he leaned forward and continued to look me in the eyes and said , "TRUTH." I told him, "Some people don't believe in Santa Claus. Most adults and many children stop believing in Santa just like in the story Polar Express. I believe in Santa. I have seen Santa and I will believe in him for the rest of my life." He seemd to agree with me and said, "I feel sorry for the people who don't belive in Santa. They've lost somethine magical." The boys are obviously wrestling with this because I had the exact same conversation with James today. I realized the magic was changing for my little boys and that this would probably be the last year of real childhood Christmas magic. I know they will both believe in Santa just not with the innocence of a child.

      

     While the conversation was going on with Ben I realized that indeed I have seen Santa and that I would even pass an FBI lie detector test on this one. Santa is the spirit of Christmas. He is the spirit of giving. In 2006, after Ben's diagnosis, as we approached Christmas I don't think I would have given Ben the same answer. It was going to be a lean Christmas. We had blasted through savings and our flexible healthcare spending account. Santa showed up on our doorstep in the guise of Mr Daly from our church carrying bags of toys the King's Kids performance group had purchased with money they raised from their plays. Santa showed up in the guise of others who found the time to help us decorate. Santa has shown up throughout the past 2 years with lemonade stands. Santa has shown up with dinners. Santa has shown up with a call or hug. Santa showed up today in the guise of a check for $1,000 in the mailbox alongside a bill from a hospital for $1400. Santa showed up as Dr Kanwar at Albany Medical Center who spent hours and hours completing the paperwork and doing what needed to be done to assist Dr Pearce with getting Ben home for Christmas. Without his efforts my Christmas wish would not have happened. Look around Santa is all around us and he is with us throughout the year. One of my favorite Christmas songs is, "Why can't everyday be Chrstmas?" and the message in the song is about giving and spreading happiness and joy everyday of the year not just Christmas day.

           

   To paraphrase and old newspaper editorial, "Yes Ben and James there is a Santa Claus. He exists as cetainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy." By the way I am hoping that since I have done the Santa talk that Stacey gets to do the sex talk. She should have some time to work on that one. I think there are even books written on that one.

12/21/2008

   The morning started out with a call to Stacey to see how things were in NYC. She and Ben were getting ready to go with a group from the Ronald McDonald House to the Hard Rock Cafe for breakfast. It was going to be a fun morning for the two of them. She thought they would end up back at the RMH around 11:30 AM. So there was no real rush for James and I to get on the road. While James was getting dressed and GrammaMac was getting him breakfast I cleared the snow off the driveway and walk. I loaded the car with the few supplies we needed for the trip. Last weekend when we had brought fire wood from Uncle Rick's house the rear tires seemed a little low. When I had the oil changed and wipers replaced last night the folks at JiffyLube also topped off the washer fluid and checked the tire pressure. Even though everything was fine I double checked the washer fluid and checked the tires myself. Around 9:30 James and I piled into the minivan and headed out on our journey. As sson as we were on the NYS Thruway heading towards NYC I knew it was going to be a fun journey. The road spray was making the windshield dirty faster than I could use the windshield washer to clean it. I was glad the new wipers were in place and I had plenty of washer fluid, but, Janes was not really satisfied with the slight level of dirtiness I was maintaining on the window. We were about 40 miles into the trip when I noticed a slight pull to the left and a very spongy return to the center of the lane. I pulled into the right lane and continued to drive at the speed limit. Thinking I would stop at the next rest area to see what was going on. In a few minutes a car passed me with a woman pointing at my drivers side rear tire and making hand motions that confirmed the tire was going flat. We made it to the next rest area with it just starting to cause very noticable vibrations. We went inside and I looked ofr fix-a-flat spray and got james a hot chocolate. They didn't have any so I went to the air pump to fill up the tire and hope to get to the next exit. At the air pump I needed quarters so I went to the little hut that houses the gas pump attendant to get change. The pumps were mobbed. People were buying window washer fluid left and right. There was a line of 6 people ahead of me. It went rapidly and I noticed they had a can of fix-a-flat stuff on a shelf. The attendant was very surprised I wasn't buying washer fluid. The fix-a-flat stuff seemed to work although it didn't fill the tire the amount it should have. As I was doing this all I could think of was my Uncle Jack, who owned MidTown Tire in Troy, telling me once how much he hated this stuff. He always said, "It didn't really work and it makes a real mess when you have to replace the tire on the rim." That was a long time ago and I was hoping they had improved the formula. I drove around the parking lot as the directions said and checked the tire. After putting in a little more air James and I returned to the highway. I just wanted to get to the next exit and go find a tire center of some sort. When I was inspecting the tire for nails, etc. and using the fix-a-flat I noticed not one, but, bumps or bubbles on the sidewall of the tire. One was the size of a quarter and the other a half-dollar. They were soft and I knew that was not good. We headed out onto the highway and I found a slow moving RV with car in tow to follow. My thought was that the tire was fragile and I needed to watch the speed. I also wanted to make sure James was not afraid. There was a slight vibration in the car and he told me it was making him think "bad" thoughts after I told him to think "happy, good" thoughts and not to worry. Inside I was praying please God just get us to a place I can buy a new tire. I have had a blow out before in a vehicle so I know I can handle the explosive loss of control, but, I also never wanted to go through it again. James and I took the next exit, but, we couldn't find anyplace open that would be able to replace out tire. We stopped at a Dunkin Donuts and I asked several people and they had no answer. We were about halfway between Albany and Kingston. I decided to head towards Kingston. It's big enough that there has to be someplace there that would have the tire we needed. My GPS unit was not very hopeful. It kept telling me the nearest place was in Wappinger Falls. I called my sister Janine and asked her to look online and find someplace. She gave me the address for a Mavis Disount Tire and I put the address into the GPS. We were 25 miles away and James counted down the miles. We made it and they even had the exact tires on the minivan. While it was replaced James and I went to Barnes and Noble bookstore that was across the parking lot. He read quietly and I ended up purchasing a Marvel Comic Character Encyclopedia book for him. We ended up back on the road around 12:30 PM. Aside from some bad traffic the rest of the trip was uneventful. We arrived at the Ronald McDonald House around 3:30.

     We had out last dinner at RMH and said our goodbyes to some of the families we had befriended. As we were exchanging contact information with one of them from Buffalo, NY the Dad said to me, "Congratulations, I hope we never see you here again. It's kind of like getting out of prison isn't it. It's nice here and they try, but, it's not the same as being home." I told him I knew exactly what he meant. I wasn't even the one who was there all the time. They are expecting to be down there until February. We wished them well and told them we would look them up when we went out to Buffalo to visit Stacey's Mom and sisters. I packed the minivan while Stacey cleaned the room and we were ready to go around 7:30 PM. Aside from some traffic we had an eventful return home. We arrived around 11:30 PM. It was great to be home and in our own beds. It even looked like there was going to be school on Monday so I knew Ben would get one of his Christmas wishes and I already had mine. I actually woke up during the night and went and sat in the boys room for a little while just looking at them and listening to them breathing. Sunday was going to be a good day.

12/20/2008

   After a very long day Ben is home and we are all sleeping in our own beds tonight. I'll tell you more tomorrow.

12/19/2008

  Well, the weather outside is frightful. On my way home from work the windshield on the mini-van was icing up. So I stopped at Jiffy Lube and had them replace the wipers and do a necessary oil change aqnd fluid top off. Ready to go I started heading towards home to get James, change my clothes and grab some supplies. Stacey called to tell me that it was snowing in NYC and near white out. While I was speaking with her Miss Kathy called to let me know she would watch James so I didn't have to bring him with me. I pointed out that my Mom was at our house so James could stay with her. Miss Kathy asked me to be careful and not do anything foolish. I promised I wouldn't. A couple of minutes after that call my brother Rob called from Ct. to tell me that it was really bad down there and to reconsider making the trip tonight. I was beginning to think the universe was trying to tell me something or at least some of the people who love us. As I walked into the house my sister Janine called me to tell me that a wine tasting she was supposed to lead tonight was cancelled and that she thought the roads were horrendous. Before she could ask me to wait until morning to head to NYC I told her I had already received the message. When I told James we were waiting he was very disappointed, "Come on, you and I  can make it. I know we can. We make a good team." I explained to him that we did indeed make a good travelling team, but, that I was more concerned about the other drivers. He accepted it and we played in the snow for a little while. We are planning on heading out in the morning and then coming home in the afternoon. When I called Stacey to tell her we were waiting she told me what Dr Pearce had said when she called her. Dr Pearce called and said, "Bring Benjamin home. We need him up here." Albany Med had already contacted the manufacturer of the drug and it will be arriving there on Monday for Ben to receive on Tuesday. Ben is hoping beyond hope that North Colonie has school on Monday. He really wants to see all of his friends.

12/19/2008  Part 1

   Dr Pearce and Albany Med have come through with my Christmas wish. Ben will be starting the MTP chemotherapy in Albany next week. Stacey is coordinating with Memorial Sloan in NYC to get the necesary supplies and things in place for next week. I will be racing the winter storm that is hitting the Northeast today to get to NYC by tonight.  I am hoping to be leaving for NYC in the next couple of hours. The game plan is to leave NYC tomorrow afternoon to come back to Albany with Ben.

12/17/2008

  We have not heard yet from Dr Pearce about how the hospital meeting yesterday went. It is likely the meeting was late in the day. Stacey called the hospital, but, Dr Pearce was out today. Hopefully we will hear tomorrow. Stacey and I have decided that we will have Ben home for Christmas no matter what. If we have to he will receive the MTP at Sloan next Tuesday and I will bring them home for Wednesday and Thursday then I will bring them back so he can be admitted for the Ifosfamide and MTP on Friday. The adventure continues and we will adapt and do what needs to get done.

  Ben was home for the weekend and went back to the Ronald McDonald House in NYC Monday night. He was crushed that school was cancelled on Monday. I think he was the only kid around here that was disappointed. He continues to do well with the latest treatments and the doctors are pleased with his progress. After his bilateral thorocatomy in October he was telling everyone that he is a two time cancer survivor. The tumors were removed and we are holding that close to our hearts and continue to believe that he is NED and that the chemotherapy is doing what it is supposed to do. We are so thankful for all of the help and support from you. We never would have made it through this season travelling back and forth to NYC and staying at the RMH without the Ben Fund. The best Christmas gift Stacey and I can receive is to have Ben and James at home for Christmas. We were even able to get the tree up over the weekend. It won't take long to wrap the presents and we are ordering Christmas dinner out.

12/13/2008

 The weather was getting worse and worse while I waited for Ben and Stacey at the train station. It was pouring rain and starting to turn to real freezing rain. I called Stacey to see where they were and she said that they were stopped on the tracks somewhere near Hudson, NY. The train was stopped because there were trees down and laying across the tracks. The train ended up stopping twice and crawling for long sections of the trip. They could actually here a few trees scrape along the train as they passed. On the way home from the train station I stopped to help a State Trooper pull a huge branch off of Rt 9 near Siena College. It took all of our strength to get the road cleared. We also came across Police and Fire engines who had responded to an accident involving a car and a telephone pole. We were very happy to get to our neighborhood after midnight. As we approached we realized that there was no power in the neighborhood. As we drove through the house it was eerily dark and quiet, although the trees were stating to look really pretty. We came around the turn approaching our house and were realived to see that we stiil had power. A couple of neighbors did too. As we went to bed we could hear large branches breaking off trees and saw the brilliant flashes of power transformers shorting out in almost every direction from our house. Ben and Stacey tried to wake James to surprise him, but, he was slleping soundly. Since he was sleeping in our bed Ben crawled in with him. We all thought it would be a great surprise for James. After 1 AM I was awakened by the alarm on my backup battery unit that our computer is plugged into. Our power was out. One of those big flashes or cracking branches was the end of our power. I looked outside and there was substantially more ice build up on the trees. Our electricity returned around dinner time today. We managed to have a great time. Last night Ben and I slept in sleeping bags in front of a nice fire in our fireplace. We also were able to find open restaurants and cook on our gas range. The fireplace kept the house tolerable. I used power inverters to plug our sump pump into onr of the cars and let it run all night. If James and I had gone to NYC last night our basement would have flooded. James was really funny when he found out about the power inverter and that it converted the cars batter/DC power to AC like the house. He said, "You know if you had to use it on something you could have used it on the TV." Our phone stopped working so we had to use our cell phones. I used it to recharge the batteries for my cordless chain saw and cut up some of the wood from the fallen branches around our house. It's not that efficient, but, green wood helped augment the little seasoned wood that I had on hand or could find to purchase. While cutting up the wood a power company truck puled up and told to expect to have no power for 4 or 5 days. I called my brother Rick who heats his house with wood and he told me that he had more than enough wood for the season and I could go to his house in East Cropseyville. I decided to bring the boys to his house and we had a great time. The boys helped us split wood. James bravely climbed to the top of a big log pile. Ben tried his hand at splitting wood. It was hilarious to hear him shout, "Fire in hole." every time we hoisted the maul forcefully up in the air to bring it down sharply on the logs. The boys also had a great time with their donkey, miniature horse and multiple cats. Travelling along the roads we marvelled at the magnificent beauty of the ice covered trees as the setting sun made them look like jewel encrusted sculptures.

  Stacey and I decided that she and Ben should leave tomorrow or on the first train we could get them on to go back to the warm comforts of the Ronald McDonald House in NYC. Since it looked like the power was not coming back for a while we thoguht she may as well take James with her. My mother is staying with my brother Rob in Ct and she could ride the train from there into the city and stay with them. His next MTP infusion is scheduled for Tuesday morning. Since the power is back on they will be staying until Monday night. We are working with my brother to figure out when we get my mom into the city. Ben will get his MTP treatments on Tuesday and Friday this week in the day clinic at Sloan in NYC. If all goes as planned in Tuesday at Albany Med he will becoming home next weekend for real. He will get his MTP treatment in Albany on Tuesday before CHristmas and the his MTP and ifosfamide treatment on the day after Christmas.

  We know many people are are without power around us. Please pray for them and if you can check to make sure they are ok. It is really cold and we had the advantage of a fireplace and the right equipment to help us. I was kicking myself for not being prepared with enough firewood. Although there was plenty of green wood for me to cut up. It's better than nothing and my big brother came to our rescue.

12/11/2008

    I just want to give all of you a quick heads up. As I am typing this Ben has finished his last L-MTP-PE infusion for this week. I haven't told James yet that they are coming home for the weekend. I think it will be a wonderful surprise for him. If Ben is up to it he may even go to school tomorrow - unless the weather closes school. Stacey and Ben really need the break from NYC. Stacey called a little earlier this afternoon and asked if I thought it would be a good idea for them to take the train tonight and come home for the weekend. Of course I said yes. They should be leaving the hospital any minute and heading to Penn Station to catch the 8:20 PM train to Albany-Rennselaer Station. I will be heading over to pick them up around 10:30 PM. Our friend Kathy had been at the house to meet James at the bus stop and she has volunteered to stay here with James while I go get them.

12/10/2008

  I will start with good news and then head backwards in time and see where we end up. Stacey talked with Dr Pearce yesterday. The doctors and review board (or whatever it is called) will be meeting next Tuesday to decide/approve the L-MTP-PE will be able to be administered at the Children's Hospital at Albany Medical Center. As you all know that is the main reason Ben is getting the treatment at Memorial Sloan instead of in ALbany. Dr Pearce assured us that the meeting is mostly a formality and that we should not worry about the outcome. We like reasons to not worry so we will hand that one over to her. If we want to be back home for Chrstmas we need to have his treatments moved to Albany. Ben is scheduled to start his next Ifosfamide treatment next week. If we start it down in NYC we will be in NYC for Christmas. The treatments and side effects tend to follow patterns. We expect the Christmas would end up like Thanksgiving did and that he would make it through most of Christmas day and then have to be admitted to the hospital an Christmas night. If we start the Ifos at Sloan he would be expected to stay for the side effects here. After talking with Dr Pearce we are going to wait and have him admitted to Albany Med the day after Christmas to start the Ifosfamide. So next week may be our last week in NYC if the MTP can start to be given in  Albany Christmas week. James is really stressing out about where we will be having Christmas and when we will get the house decorated. Stacey and others have asked me what I want for Christmas this year. I have decided what I want most is to have my family together and to see the boys faces as they totally get into the holiday spirit. I know that we will be able to make it happen where we need to, but, the best place would be home. Ben is showing signs of being too mature to sit on Santa's knee. 

  A new term has entered into our vocabulary lately. We have started to refer to the Children's Hospital at Albany Medical Center as our home hospital. I know that when people travel quite a bit they say the best part of travelling is coming home. We have now spent time in many hospitals and we are all ready to get back to Albany. We know that everyone there is doing everything they can to get Ben back here. The other day Ben's calssroom was able to do a video call with him. Ben could only hear the class, but, they could see and hear him. The class was thrilled. They talked for a while and did story time. The kids were thrilled to see their classmate. They asked Ben all kinds of questions. WHen the call was over Ben's teacher Ms. Berger asked Ben if he had any questions. His immediate question was, "How is James doing?" The kids said he was doing well. Stacey and I think Ben worries about James. 

    On Monday I was having a bit of a down day - Ben and Stacey withdrawal. I managed to work it out so I could pick James up at 2:30 from school. As we were leaving the school building James was running a little ahead or me challenging me to a race to the car. As we passed an older boy he greeted James and turned to me and asked about Ben. As I walked along side him I told him that Ben was doing well and that we were hoping to have him home for Christmas so he would probably be seeing Ben around school soon. The 5th or 6th grade boy reached out and touched my upper arm with incredible love and said, "Don't worry Mr Stowell. Ben is going to pull though this. He is going to be ok. I just know it." The only words I could get out was, "Thank you." As he headed home James and I raced to the car. I asked James if he knew who the boy was and he wasn't sure. What a fine caring young man? His parents must be very proud of him.

12/7/2008

   Ben is doing well. In fact the whole family is pretty well. Stacey is fighting larangitis. Ben's counts have been very low, but, they are coming back up. I have been spending as much time as I possibly can in NYC to help her stay away from Ben. He doesn't seem to be catching the bug she has. James and I are down here agian this weekend. I am planning on moving this site to a new location so I stop having the issues with updates. Ben will be receiving his next round of MTP Monday and Thursday this week. Hopefully the folks at Albany Medical Center have gotten all the ducks in a row so Ben can start getting the MTP up in Albany. We will be finding out this week. If they haven't he will be getting his next Ifosfamide treatment down here and that means we will be having Christmas in New York City. Ben and Stacey are going to see the Christmas Spectacular at Radio City Music Hall tonight. Yesterday a group called the Candlelighters in NYC took us to Bloomingdales to get the boys pictures with Santa. Santa was amazing with all of the kids. He talked to them all about hope and believing. He closed by saying, "No matter what always believe in Hope." Santa spoke individually with each child and then presented them each with an ugly doll. The amazing thing is that Ben and James both really wanted a specific ugly doll and even though nobody said anything to anyone they both received the one they really wanted. A little Christmas magic in the Big Apple.

11/30/2008

The weekend was fun and somewhat relaxing. I managed to avoid the deep cleaning of the bathroom. We started work on the boys Pinewood derby cars for Cub Scouts. They are very excited and have very specific designs in mind. I can't wait to see how they come out. On Saturday Ben received notes from his "Chemoangels" - Angel Kasey and Angel Julie - it really put a smile on his face. I remember when I was a little kid how special mail made me feel. The notes are always simple and sweet. They usually talk about what they have been doing and wish Ben well. For instance Angel Julie was up late milking their cows. She lives on a farm. Angel Kasey talks about the fun she has with her children and Ben talks about her duck periodically although she has only mentioned it a couple of times. We do know that a couple of you have actually signed up for the program. It is a big commitment for a small act that brings an amazingly huge benefit for those receiving these loving notes every week.

Another amazing thing arrived in the mail. We signed James up for the Super Sibs program soon after Ben's diagnosis. We were, and still are, concerned about James and how he is getting through everything. James received a large envelop from Super Sibs. He was happy that he had some mail too. He took is into the family room to open it. All of a sudden he let out a big whooping yell - "It's a certificate of Achievement." He read it to us with the pride of someone who won an Academy Award. It was given to him for being a great brother during 2008. He was officially recognized for his wonderful achievement. We are going to have it framed and will be putting a photograph of it on James' page. He was dancing around with such joy and Ben joined into the celebration. It was really cool and actually brought a tear to the eyes of both of the adults in the room. I wish I had had the video camera ready or any camera handy.

On Sunday after church Ben and I went to our traditional breakfast at the Circle Diner. It was really nice. We ran into some friends from the baseball league the boys participated in. Ben and James both want to play again this year. I have been debating about the level of involvement I can pull of this year. Many of the adults involved with baseball last year have been encouraging me to coach again this year. After seeing them at breakfast I am strongly considering it. Ben really likes it when the staff at the Circle Diner recognizes him and says hi. It's kind of like walking into Cheers with Norm. We also had the opportunity to see Brendan's aunt and she came over to say hi to Ben. Brendan is Ben's friend from Siena who had osteosarcoma in his leg and had a scholarship to play lacrosse there. Ben thinks of him as a major inspiration and talks about him as a fellow survivor. It was nice seeing her. Brendan is 6'3" tall and Ben once told him that the doctors had told him that he was going to be 6'4" so Brendan could look up to him.

Ben is at the hospital today receiving his MTP treatment. His platelet count is still low so he is also receiving a platelet transfusion. Since there was no school today Stacey brought James with her. We didn't think Ben's platelets would be low enough to require a transfusion. I spoke with Stacey a little while ago and James is doing a great job in the playroom at the clinic in the playroom entertaining him, playing with other kids and the child life specialist. He hasn't complained once about having to be there. The boys and Stacey were supposed to be going to see "Hotel for Dogs" at 1:30 with the Starlight Starbright Foundation. Obviously we had to cancel. We will probably go tonight after going to Carrabba's for dinner. We try to eat there at least once a month. Apparently some of you folks do to. Remember we did the experiment about having you thank them for supporting Ben by asking to speak to a manager and telling the manager that you were there that night as a thank you for the Latham Carrabba's helping Ben out. Guess what? It worked. Thank you for thanking Carrabba's. Feel free to thank them again.         

Ben will be getting his follow up CT scan tomorrow so we can find out more about what is going on inside his lungs.

The weekend was fun and somewhat relaxing. I managed to avoid the deep cleaning of the bathroom. We started work on the boys Pinewood derby cars for Cub Scouts. They are very excited and have very specific designs in mind. I can't wait to see how they come out. On Saturday Ben received notes from his "Chemoangels" - Angel Kasey and Angel Julie - it really put a smile on his face. I remember when I was a little kid how special mail made me feel. The notes are always simple and sweet. They usually talk about what they have been doing and wish Ben well. For instance Angel Julie was up late milking their cows. She lives on a farm. Angel Kasey talks about the fun she has with her children and Ben talks about her duck periodically although she has only mentioned it a couple of times. We do know that a couple of you have actually signed up for the program. It is a big commitment for a small act that brings an amazingly huge benefit for those receiving these loving notes every week.

Another amazing thing arrived in the mail. We signed James up for the Super Sibs program soon after Ben's diagnosis. We were, and still are, concerned about James and how he is getting through everything. James received a large envelop from Super Sibs. He was happy that he had some mail too. He took is into the family room to open it. All of a sudden he let out a big whooping yell - "It's a certificate of Achievement." He read it to us with the pride of someone who won an Academy Award. It was given to him for being a great brother during 2008. He was officially recognized for his wonderful achievement. We are going to have it framed and will be putting a photograph of it on James' page. He was dancing around with such joy and Ben joined into the celebration. It was really cool and actually brought a tear to the eyes of both of the adults in the room. I wish I had had the video camera ready or any camera handy.

On Sunday after church Ben and I went to our traditional breakfast at the Circle Diner. It was really nice. We ran into some friends from the baseball league the boys participated in. Ben and James both want to play again this year. I have been debating about the level of involvement I can pull of this year. Many of the adults involved with baseball last year have been encouraging me to coach again this year. After seeing them at breakfast I am strongly considering it. Ben really likes it when the staff at the Circle Diner recognizes him and says hi. It's kind of like walking into Cheers with Norm. We also had the opportunity to see Brendan's aunt and she came over to say hi to Ben. Brendan is Ben's friend from Siena who had osteosarcoma in his leg and had a scholarship to play lacrosse there. Ben thinks of him as a major inspiration and talks about him as a fellow survivor. It was nice seeing her. Brendan is 6'3" tall and Ben once told him that the doctors had told him that he was going to be 6'4" so Brendan could look up to him.

Ben is at the hospital today receiving his MTP treatment. His platelet count is still low so he is also receiving a platelet transfusion. Since there was no school today Stacey brought James with her. We didn't think Ben's platelets would be low enough to require a transfusion. I spoke with Stacey a little while ago and James is doing a great job in the playroom at the clinic in the playroom entertaining him, playing with other kids and the child life specialist. He hasn't complained once about having to be there. The boys and Stacey were supposed to be going to see "Hotel for Dogs" at 1:30 with the Starlight Starbright Foundation. Obviously we had to cancel. We will probably go tonight after going to Carrabba's for dinner. We try to eat there at least once a month. Apparently some of you folks do to. Remember we did the experiment about having you thank them for supporting Ben by asking to speak to a manager and telling the manager that you were there that night as a thank you for the Latham Carrabba's helping Ben out. Guess what? It worked. Thank you for thanking Carrabba's. Feel free to thank them again.

Ben will be getting his follow up CT scan tomorrow so we can find out more about what is going on inside his lungs.

11/28/2008

   Last night around 8 pm, after a truly wonderful Thanksgiving day, Ben spiked a fever of 102.6 degrees. We called the after hours clinic number and were told to take him to the Memorial Sloan Kettering Urgent Care Walkin facility. Upon arrival he was given antibiotics and his fever was still just under 102 when he was admitted to the hospital. His fever broke between 3 and 4 am. It then returned around 9 am. His blood counts have tanked. We were not surprised that his counts dropped. We actually thought that they would drop on Wednesday and we were just hoping to get through Thanksgiving when they didn't. Well he made it through the day. What surprised was that we were starting to think he was past the danger point and the drop was much more rapid than usual. We had been feeling his forehead, neck and tummy all day and never felt it rise. We used the thermometer once or twice and everything was normal. We could visually tell his counts were dropping. He was absolutely exhausted and getting uncharacteristically cranky so we used the thermometer. We are not sure how this is going to impact the L-MTP-PE treatment, but, it affirmed that we definitely don't want to be taking him back and forth on the train between treatments. I will update tomorrow about the fun parts of the day.

11/27/2008

   We are extremely thankful this year for so many things. We have come to learn just how fantastic Ben's medical team is during our exposure to other families and hospitals durng this journey. We are so thankful for Dr Pearce and all of the staff at AMC. We are thankful for all of you who have given us so much during Ben's treatment. We have had so many things happen that have managed to keep us going that I cannot possibly write them down here. We hve tried to thank everyone, but, it is just impossible. You have lifted our family and carried us on your shoulders. I know that there is no way that I could not have made it through these past 2 years without each and every one of you. We are thanful for every act of kindness large and small. Benjamin and the Green Drakkoman have an army of warriors supporting them and we are thankful that for each and every member of that army.

   I will tell you about our Thanksgiving day adventures in the 11/28 update.

11/25/2008

   Ben received his neulasta shot this morning. He and Stacey are heading to breakfast at the Star Diner on 1st Ave near Ronald McDonald House when they are done. I think that diner has become our family's favorite breakfast stop in the city. Perhaps a new tradition is forming. When Ben was released from the hospital on Monday he was given a backpack that has a battery operated pump and was giving him fluids. He will probably be able to stop carrying the pump by tomorrow. There was a little blood in his urine and they want to make sure he is well hydrated and flushing out his kidneys and bladder. We are looking forward to a fun  Thanksgiving in the city.

11/24/2008

   Ben and Stacey left the hospital today. They are back at the Ronald McDonald House and he will be going to the clinic tomorrow for his L-MTP-PE treatment. Stacey told me that they just call it MTP down there. That's easier to type so I may start calling it that too. It took forever for Ben to be discharged today. Apparently they didn't tell everyone that was supposed to be notified and the hospital called the house because they couldn't find Ben in the hospital and were concerned. I guess the paper work caught up on the floor because Stacey checked and they were indeed discharged. James and I are heading down on Wednesday. It will be nice to be together for a few days. Ben will be getting the MTP on Friday. A friend of ours will be taking Mocha for the weekend. We also want to thank you for the support you have been giving us. We have had some surprise visitors in NYC and we know that a couple of you are planning on coming down to spend time with Ben and Stacey during the week. We also received a couple of gift cards for New York City based food and food shopping. The advice of using the Amtrak rewards program is going to pay off after our next trip. The cards and things Ben has received at the RMH have made him feel relaxed and at home. We have received a great deal of advice on NYC and it has really helped us feel comfortable there. We were even invited to join and "invitation only" NYC insider newsletter and web site to keep us informed on the happenings in NYC. The boys have both decided that they really like city life. It is fun to watch them because they really do seem to fit right in - even with a Red Sox shirt on. Ben even had someone shout to him, "Hey, Go Red Sox. The Red Sox nation is everywhere." when we were in Times Square. 

11/23/2008

 I am sitting here next to Ben and he is watching a really awful cartoon called "Chowder." It's 8 year old boy bathroom humor at its worst. I suppose if I was 8 years old I would be enjoying it. Ben had a great night last night and I must admit I really miss being by his bedside on the overnights. Our laptop is acting a little flaky and I should probably rebuild it. The doctors down here are thrilled with the way he has handled the chemotherapy. I am really proud of how he has handled himself. It has not been easy for Stacey either, but, she has done a great job of adapting and creating a routine here. When I was down last time we were able to get chair massages at the RMH while Aunt Carol sat with Ben. I signed Stacey up to get one today while I am with Ben. RMH is nice because James can be in the playroom or the computer room while she is getting it. He's really supposed to be directly supervised because he is only 8, but, he is so well behaved we can get away with it.

  Yesterday I went with James to the Bronx Zoo on a trip from the Ronald McDonald House. I think it was sponsored by the NYPD or NYC because we travelled by police bus and were met at the Zoo by a police escort to go to a seperate parking lot. The zoo was practically empty and it was a great time. James kept pointing out things he wanted to show to Ben. He viewed it has a scouting trip to share later with Ben. James and I will be heading home later today.

  Ben will be getting out of the hospital tomorrow and will be back to being an outpatient down here. He is looking forward to it. We have been sharing all of the postings on the web with him and he is thrilled that he has actually been getting mail at the Ronald McDonald House. James decided he wanted to move down here with Ben and stay in the RMH, but, we pointed out that he really needed to stay home with me for school. Stacey's mom is oing home this week and James and I will be holding down the fort alone until my mom comes up from Florida. She should be getting up north around 12/10.

   Everything is going really well and we are so thankful for all of the support you have been gving us.

11/18/2008

  Ben is doing well. He seems to be tolerating the chemotherapy really well and he feels comfortable with the nursing staff and doctors. We are working out the details on getting him tutoring in NYC lined up so he is keeping up with school work. Stacey has been doing the work with Ben that his teacher sent with him. I will be bringing down more work from her over the weekend. Stacey and Ben actually like doing it because it breaks up the monotany of the hospital. They have had a couple of visitors from up north that have helped as well. Ben's great-aunt Carol has been staying down there off and on as well and that has given Stacey the chance to get out of the hospital and sleep at the Ronald McDonald House.

            

   The weekend was wonderful. James and I headed down to NYC on Friday on the 4:15 PM train and we returned on the 7:20 PM train on Sunday. In those 2 days we managed to cram a great deal of fun as well as some downtime. On Saturday we went to Times Square and spent several hours at Toys R Us. Ben wouldn't go on the 4 story Ferris wheel, but, James and I did. The boys were great. They looked at all the toys with amazement. We bought a single Nintendo DS game that Stacey had promised Ben as a reward for being exceptionally brave when we first in the NYC and he had to get have his port accessed by a new nurse. Then we walked through the store and they marveled at the shear volume of toys. I saw the largest stack of Wiis I have ever seen. If anyone needs to get a Wii for Christmas and can't find one up here let me know and I'll pick 1 up for you next weekend. The offer is only good for the first 3 people - I can't fit more than 3 in my suitcase. They had a big display of a toy called Robot Galaxy. It is like a "Build-A-Bear" for Robots. The boys really liked it. They picked out all of the pieces and built there own talking robots and then they launched them through the rings of Saturn into Cyberspace. They have to wait until Christmas to receive them, but, they can plug them into the computer and go online and play games and interact with a whole cartoon Robot Galaxy. It's kind of like Robot Webkinz. I wouldn't mind buying a franchise based on what in NYC. They had at least 6 people that couldn't help kids make robots fast enough. I told the boys these were presents from GrammaMac. So when you read this Mom you know it was really my idea they be from you.

             

     After Toys R Us we headed towards the M&M store. As we headed through Times Square we walked to a perfect vantage point to see the "Naked Cowboy." I am not sure why, but, Ben had on his list of things he wanted to do in NYC one of them was to see the Naked Cowboy. We looked at him from afar because there was huge number of people around him and television camera crew. Ben decided the crowd wasn't for him and I couldn't figure out if there was actually a line to pose with him. When we were in the M&Ms Store the boys just stood in awe of all the merchandise and the place was packed. One of the things they have there is an M&M Mood Detector that basically tells you what color M&M you are. We waited for 15-20 minutes for the boys to get up to stand before the machine on a special metal M&M mat with a large flat panel display and funnel shaped detector over the giant silver M&M mat. As they stood there the machine asks questions and tells them to do things. The boys played along and James ended up doing the Hockey Pokey.  The machine told James that he was a chocolate/cream M&M which is one that is both light brown and white. It said that he was like chocolate and always went well with other things - "Everything is good with chocolate." Ben was a different matter it. Asked him a couple of questions and asked him to do a couple of things and the declared him to be the very rare white M&M. When it described him it said, "You are the kindest person who has ever stood on that spot." The people in line actually said "ooo" and "awe." Up until that moment it looked like the machine was basically randomly picking colors and saying fortune cookie like sayings. Stacey and I just looked at each other and as we walked away she said, "Do you think there is actually somebody manning that thing?" I said, "I don't know." Even random things can have profound meanings.

             

    We went to the Hershey store and then back to the Ronald McDonald house for a wonderful dinner that was prepared by a group from a company called Situs. They handle commercial real estate properties and issues. They put on a lovely dinner and even did a scavenger hunt for the kids after dinner. There were even a couple of their kids helping out. I thanked several people in the group as they served the dinner. As we were eating I went up to one of the folks and asked them if they new of a good Jewish deli that had matzo ball soup. Stacey loves matzo ball soup and her favorite source was in Buffalo and they closed. The woman and her husband told me they would ask around, but, they lived in the area and had some ideas. We had pretty much finished and the boys had headed off to the playroom when she came over to our table with a napkin. She had the name, address, and phone number of a deli 2 blocks away and said ti was unanimous throughout the group that this was the best in the neighborhood. She had also put her phone number on the napkin and told Stacey that if she needed absolutely anything while were down there to give her a call - "get your nails done, etc." She said, "I have 3 kids of my own and I can't even imagine." We thanked her and she went back to serving food. Stacey and I looked at each other and Stacey said it first, "We used to be on the other side of those tables." I replied, "Thank God there are people to be on that side of the table." The world can be very cynical and many times we all come across situations and people that make us question things. If there is one thing I have learned from all of this it is that the world is full of amazing loving people.

 

11/15/2008

The trip to New York City was uneventful. We followed the advice of my Tomtom GPS device and ended up going through New Jersey and took the George Washington Bridge. The boys decided that if George Washington was alive he would be very proud of it. They marveled at the nighttime skyline as we crossed the bridge. They were amazed that it was possible to merge at least 8 lanes of traffic into 3. It took us 20 minutes to get through the toll booths and across the GW bridge. On the other side the GPS was very confusing because it thought we were on the top level of the bridge and we were on the lower level. I ended up in the far right lane when the exit I really wanted to take was a left side exit. It was easier and safer to just take the wrong exit and let the GPS recalculate our route. Stacey and I are looking forward to meeting the Doctor and getting moving on this stage of treatment. As we came out from the George Washington Bridge and the city really came into view Ben looked around and said, “Oh….my…..God.” It was very cute. He enunciated each letter and said each word with equal emphasis. We asked him what was up and he replied, “I am in New York City. This is so cool.” We ended up driving past Yankee Stadium and James pointed out to Ben that he needed to be quiet and look closely at the stadium because this might be the last time they ever were able to see it. We made our way to the Ronald McDonald House on East 73^rd st and after unloading everything I put the car in a parking garage. When we left the next evening the parking cost $56. Our room at the RMH is a very basic hotel room with no art work on the walls. We are responsible for all aspects of cleaning it and the linens are our responsibility. We ended up getting our own linens and we brought our own pillows. It is a very nice place filled with love. When we arrived we walked into the lobby and were taking in the whole entering experience. There is a walkway on one side of the lobby, opposite the main doors, that is enclosed in glass. We looked up to see a boy around the boys age shouting through the glass, “Ben…Ben…It’s really you…Ben…wait right there I’m coming down.” Ben and James were beside themselves to actually see a familiar face. It was one of the kids they have played at Gilda’s Club and seen at Albany Med. He is the brother of a little girl named Ila. Howie and the boys had a great time exploring the facility and Howie showed them around. Unfortunately, Howie has spent a great deal of time down here. Ila has neuroblastoma. They left for home the next day while we were at the hospital with Ben.

   Ben was able to go the Natural History Museum and had a great time exploring the city. He has spent most of his time at Sloan Kettering. The actual administration of the L-MTP-PE takes about 30 minutes. The rest of the time is spent waiting for the drug to come up from the pharmacy and watching him for side effects. He has had mild fevers, chills, rapid heartbeat (tachycardia) and rigors each time. Rigors are like really bad shivering. His mood is great and the side effects tolerable and short term. They tried treating them with Benadryl and Tylenol and they were even less yesterday - the 2^nd time. On Monday he will be admitted to Memorial Sloan Kettering for the addition of the Ifosfamide and Etoposide. He will only receive those 2 drugs for 6 days, once a month. Everyone seems to be in a good mood although we are all missing each other during the week. James’ teacher said she has seen a slight difference in his performance at school this week. I have no doubt that we will all start to get into a routine soon. I am going to work on telecommuting as an option for me to get more time in NYC.

  When James and I came down last night on the train his ticket was free. It is definitely cheaper to come down on the train than to park for several days. Our train ride was uneventful although it is fun to experience things through your children’s eyes. James and I walked several blocks before getting a taxi. He really enjoyed walking through the city. Even thought the sidewalks were very crowded he did an excellent job of following me through the crowd. I didn’t have to worry about him. We had a great NYC taxi cab ride. The kind where it is almost an amusement park ride as the driver races the red lights and finds the fastest lanes. The boys were a little disappointed James and I didn’t get into the “CashCab.” “Cash Cab” is a TV quiz show on Discovery Channel that takes place in a NYC taxi cab as it brings people to their destination.

  It’s a rainy day down here and we are about to go out and head for Times Square

11/11/2008

  Quisk status report. We signed the paperwork yesterday to allow Ben to start receiving the L-MTP-PE today. Yesterday was a brutally long day and the results of his blood tests came back too late for him start receiving the drug. He experienced a fever and bad chills. He also had a tachicardia, which is a very rapid, slightly erratic heartbeat. The side effects were not unexpected and did not fall into the severe category so treatment will continue. It is kind of amusing to me in a very weird and dark way that the side effects he experienced would have had a parent normally close to panic and rushing their child to a hospital. In August of 2006 we would have been doing that. Now we look at it in a very matter of fact way.

  Tomorrow he should be starting Ifosfamide and Etoposide. He will be admitted to receive them. I have not had that confirmed yet. The last I heard they were having difficulties finding him a bed. You may recall that the Ifosfamide had a really major effect on the tumors over the summer. We decided that since it worked we would agree to give him more. It is a little scary because that is the drug that he had some issues with neural toxicity with the first time he took it. It caused his mood to darken severely and he was actually briefly comatose from it. The second and third time he received it the symptoms were less and he went though mild manic and weepy stages. There is a lifetime maximum for this drug and we are going to look into how close Ben is to reaching that amount. It will be a tough decision if he hits that number because that is the one drug we know for a fact had a positive effect on the tumors in his lungs. I do know we have the absolute best doctors in the US, if not the world, discussing his case and giving us recommendations. When we signed the paperwork it said that there were only 23 slots at Sloan Kettering for "compassionate access" to the L-MTP-PE and Ben is now 1 of those 23.

  I still haven't heard if he was admitted or not. I guess they have a full house.  The Ronald McDonald House has close to 100 rooms and it is my understanding that they are almost always near capacity. I met a family from Barcelona yesterday. I will tell you all more about the less clinical parts of the trip later.

11/9/2008

   We are about to leave for NYC. We made all of our last minute purchases of food and supplies. Our bags are backed and the car is loaded. We decided to drive down into the city for this trip. After we get setlled tonight I'll post more details. The adventure begins another chapter.

11/8/2008

  As I sat down to right this entry Ben came up behind me and reminded me that I will not be able to see him on Tuesday, Wednesday, Thursday and probably Firday so I needed to stop what I was doing and go play with him.

11/5/2008

  California Cousin Betty arrived today and the boys are loving having another visitor from the west. She pointed out that she hadn't seen Ben standing up when he was in San Diego. She is staying with us until Tuesday. Stacey's Mom is coming on Saturday to stay for a while so the 2 of them can catch up while we are in NYC. The game plan now is that Ben, James, Stacey and I will drive down on Sunday. There is a parking garage near the Ronald McDonald House. Of course Stacey and Ben will be staying therre and James and I will head home on Monday night. There is a real sense of anticipation in our house. Everyone is working real hard to be nice to each other and cram in a lot of fun. We are all going to miss each other terribly over the next 9 weeks, but, we are thrilled that Ben and Stacey aren't heading to Houston, TX.

11/4/2008

 Today is election day and the boys are thrilled that there is going to be "First" or record set with either candidate winning tonight. I think one of the magic things about being 8 years old is looking with wonder at the world around them. We are either going to have the first african-american President or the oldest when elected for their first term President and the first female Vice President. It really is a neat idea that we can change our government in such a peaceful manner. That's enough politics for here although Ben likes to inform everyone that he voted for Barack Obama on "Kid's Vote" on Nick.com. I am not sure who James voted for. I do know he was leaning towards the McCain ticket a little bit because of 2 records being set if they won. He did say he "liked Obama's policies better." He also informed me that who you vote for is a "private matter."

  It has been confirmed that Ben will start receiving the L-MTP-PE on Monday at Memorial Sloan Kettering in New York City on Monday November 10th. We don't have the confirmation yet from the Social Worker that we will be able to get in the Ronald McDonald house there so we are anticipating that and I will update tomorrow. Ben will be receiving the chemotherapy as an outpatient. He will be receiving it every Monday, Tuesday, Wednesday and Friday. Ben will have Thrusdays, Saturday and Sunday off. The infusions will probably take between 2 and 6 hours each day. He is going to lose his hair again just as it is coming back. The other expected side effects are tiredness, weakness, appetite suppression, taste issues and increased immune system vulnerabilty.  He is expected to receive this treatment for the next 9 months. We are hoping only the first 9 weeks will be done at Sloan Kettering with the rest being done at Albany Med. It is going to be a long 9 weeks. Ben and Stacey will be living in NYC for that time. We can't expect Ben to commute from here 4 days a week. The Ronald McDonald House only charges $35 a night and that is less costly than the train. James and I will try to go down on as many weekends as we can. We are working with Ben's teacher to keep him on track and I may try to set up some video conferencing technology to keep everyone in touch. We are also anticipating spending Thanksgiving in NYC and maybe Christmas.

11/3/2008

 

It has been over 2 years that we have been maintaining this site and providing updates through it. Every so often I just seem to go through periods of time that it is actually hard to sit down and write the updates. It's an avoidance issue. If I stop writing updates maybe it will all just go away - like waking up from a scary dream. It usually happens during the in between times when we aren't actively fighting the monster within Ben. We are back in the fight so here I am typing away. I have decided that I will update everyday even if it is just a sentence or 2 and that way you will have less of these huge summary updates to read.

          

  We were afraid that Ben was not going to be able to go Trick or Treating last week. We didn't know what his treatments plan was going to require or how he would be feeling. On Monday last week the boys had a wonderful surprise. After school they put on there costumes and Miss Kathy took them to the Bobrow Confectioners warehouse. It is a bulk and wholesale candy distributor in Clifton Park. They gave the boys tricker treater bags and let them loose in the warehouse. They had strategically placed open boxes of the bulk candy and as they toured the warehouse the boys took handfuls of candy. They also were able to pickout wrapped candy and the guys at Bobrow gave them a big box of candy that they had selected for them. The boys talked about the warehouse for days and still will share the adventure with anyone who will listen.

           

  We had another treat this week when a long time family friend, Nancy, came to visit. She was back in the area from New Mexico, I mean Arizona, catching up with old friends. We had a great time sharing dinner with her. She wanted to take us out to dinner, but, Stacey felt the need to cook that night so we ate in. They boys were their usual kid selfs and took pleasure in showing off for her. We also were able to get in some nice adult time with her too.

          

  As I mentioned before the boys also attended the largest, best Halloween party they have ever been to last week at Gilda's Club in Latham. It was called NoogieFest and was absolutely amazing. Every corner of the faciltiy was decorated and their were activities inside and out - games, photo booth, live music, karaoke, Wii, bouncey bounce, haunted house, crafts, food, candy to eat there, candy bags to go home. It was absolutely amazing and the volunteers and staff at Gilda's Club who pulled it off are angels on this earth. Ben and James brought their friends Noah and Aiva. I think all 4 of them will remember the party the rest of their lives. I don't know how many times the boys went through the haunted house. The college kids inside kept coming up with new ways to scare them and rearranged the haunted house at will.

            

  Halloween itself was pretty laid back. We went house to house in the neighborhood and collected even more candy. I think I am eating more of it than the boys are eating. We also went and trick or treated at Miss Kathy's and Uncle John's houses in Watervliet. Life is good at the Stowell house these days.

        

  Now for the big news. Ben has started to receive part of his next round of chemotheraoy. We are giving him Cytoxan orally each morning before going to school. He is supposed to drink extra fluids throughout the day to keep his kidneys from being damaged by the drug. He hasn't shown any bad side effects from the drug. It may impact his immune system so we are being a little more careful to keep everyone in the house healthy.

10/26/2008

  Yesterday was NoogieFest at Gilda's Club. It was an amazing experience. There were a great number of new faces and it was nice to see the organization score a big success. The boys brought Aiva and their friend Noah with them. Everyone had a great time. A group of SUNY students did a haunted house in part of the building that the boys all went through at least a dozen times. The college students actually kept changing ti by moving around and jumping out from different parts of the maze they built and changing up the way they were scaring the kids. It really was creepy and fun. We had a great deal of discussion over the costumes for the boys. I kept pushing for them to dress as ballerinas this year, but, they didn't like that idea. I also wanted to make costumes, but, they follow in the more recent tradition of store bought costumes. It was agreed that next year we will make them. We went to the store and Ben found the perfect costumer in his eyes. It is a "Dark Watch" costume. Apparently the character is from a game or graphic novel called "Battle Ground." The boys and I had never heard of it. The costume looks like a cowboy dressed in a black duster with silver trim. He has a hood under his hat so you can only see his face. Hie face has dark five o'clock shadow and an eye patch. On the lapel of the duster there is a big, sherrif type badge with a scary looking skull on it. Aside from the look of the costume Ben really liked the catch phrase for the character - "Death fears those who wear the badge." He ran around throughout the party and was a bundle of energy. Because of the hood nobody could see he was bald, even when he took off the hat. I even had a couple people who don't see him all the time ask if he was there. The boys decided that James would be Death this year. He picked out a really scary hooded pumpkin mask and the traditional hooded black robe. At the last minute I talked him into letting me put make up on him. He decided he liked my make up better than the mask. After the party he actually thanked me for doing a great job with is make up. It is absolutely wonderful to see the two of them having a great time with their friends. The enjoyed showing off Gilda's Club.

10/23/2008

Ben was very funny this morning. He wants to ride the bus to school. We aren't letting him until after the surgeon clears him and that is hopefully going to happen today. James and Stacey left early to go join the Blue Creek Walking club for their early morning, before school. walk. Ben was up and dressed and I made sure he had breakfast. As I was upstairs getting ready I heard the front door open as Ben shouted, "Bye Daddy. Have a great day." I poked my head out of the bedroom quickly and asked, "Where are you going? I'm bringing you to school today." He looked up the stairs with puppy dog eyes and a pouting lip and with his best questioning voice asked, "I was just checking to see who is waiting at the bus stop. Can I go up?" I told him no and he complied by closing the door and looking up at me with sad eyes and a funny face. I warned him that his "Face would freeze that way." We chuckled and I explained that after the doctors visit today he would probably be riding the bus tomorrow.

Last night was Pizza Night at school and it was great to see all of the families together. The cafeteria was packed and the kids were running around and being kids. Ben just likes to be a kid and he really was in his glory last night. I looked around a few times and saw Aiva holding his hand and leading him off to meet her friends. I don't think he realizes she was showing off her older "boyfriend" to the other kindergartners. The two of them are so cute sometimes. James was also hanging out with friends and moving around the croud. It is also fun to watch Ben and James intereact. They really look out for each other. At one point one of the kids was giving James a tough time. James sometimes has a tough time fitting in and can be a little naive and some times kids take advantage of him. Ben watches out for this and tries to help oir if he can't finds an adult before James gets in trouble. That happened last night. Ben came and got me when a kid was pushing James to "Kiss his butt" or he wouldn't be his friend. James was resisting, but, the situation was escalating and Ben knew that James' frustration level was getting high. The situation was resolved with a simple conversation and there were apologies made.

Ben will be starting Cytoxan tomorrow. It is a Chenotherapy assist drug that he will receive daily in a pill form. It doesn't have much of an impact itself, but, increases the effectiveness of the other chemotherapy drugs that Ben will be receiving. Next week Stacey and Ben will be going down to New York City to meet with Dr Meyer at Sloan Kettering. If I can work out the scheduling I will be going to. Ben will be starting on the L-MTP-PE next week. It is a new chemotherapy drug that is still in Phase III trials. He will be receiving it under the FDA "Compassionate Use" designation. I will let you know the schedule when we have it. Stacey is supposed to call Sloan Kettering on Monday to find out the exact timing of the appointments. Dr Pete Anderson at MD Anderson in Houston is overseeing the drug trials and is one of the top experts on osteosarcoma in the world. He has personally reviewed Ben's case and has been aware of Ben for some time now. Dr Pearce and Dr Anderson have discissed Ben's case numerous times over the past 2 years. After Ben has been to Sloan a few times the treatments will be moved to Albany Medical Center. Ben's case has helped open the doors to make this treatment available in Albany. We do know that there are other kids in the Albany area that might be able to benefit from this drug and we are doing whatever we can to help make it happen for them too.

Yesterday, Stacey and I were reminded just how high the stakes are in this battle. We try to be active and participate in the battle against these cancers that predomonantly affect children. One of the things we are involved in is an email list serve group about osteosarcoma with people from around the world. The group is wonderful and has helped us to be aware of treatments, how to handle side effects, what to expect and knowing hand holding. Positive test results are celebrated and cheered worldwide. It is also a place to lovingly share bad news. Yesterday we received the devastating news that one of the brave youngsters from the list succumbed after an extended fight. He was 16 years old.

10/21/2008

   Ben has been doing really well. The weekend was nice and quiet with the exception of 2 really cool happenings on Sunday. Around lunchtime 2 of the counselors from Double H showed up. One of them, Joe, has formed a really special bond with Ben. He is a survivor as well and is going to college for nursing. Lane wasn't one of Ben's councelors this summer. She is the reason that Joe ended up being at Double H though. The two of them played with the boys and everyone had a great time. They talked about Ben about being  "a 2  time cancer survivor." Ben has telling people that left and right. I enjoy hearing it.

  Ben and James went to bed around 8:30 PM. We were keeping them up late because we knew that a surprise was coming up from Giants Stadium. Ben fell asleep quickly, but, James stayed up until a little after 9. The Olsen family showed up at our door and we tried to wake Ben up. It took us a while to wake him. He goes through a really cranky stage of half sleep. I think it is a sleep mechanism he has developed from so much hospital time. He sleeps deeply when he can. After about 10 minutes of being very emotional and out of it he woke up for real. When he was awake we gave him the gift that they had brought. It was a signed photograph of Eli Manning that he had signed at the game just for Ben. As soon as the game ended the photo was driven up here. Francis, the young man who made it possible, is Ben Olsen's Sister's boyfriend and he is interning with the Giants. He had to drive back to college first thing on Monday morning so Sunday night was the only time he could be there to give it to Ben. They also had a hockey puck that was signed by Rowdy the River Rat for James.

   We are finding out the details of Ben's next steps and I will post them tomorrow. All is well and Ben is amazing.

10/17/2008

  No updates yesterday. The big news was from the day before and basically yesterday was spent with Ben running a ocuple errands with his Mom and going out to eat at Friendly's. He was really tired by the end of the day and went quietly to bed. He seems to tire easily and get winded with less exertion than normal. Going up stairs changes his breathing rate. It is not something that surprises us considering the operation he had 10 days ago. His lungs need time to heal and they are an amazingly forgiving organ.

  Today he woke up refreshed and was thrilled that he would be going to school. He must have asked us 100 times "What time is it?" and "Did the bus just go by?" Each time we reminded him that I was driving them to school this morning because I needed to talk with the office and James had a big solar system project that was too cumbersome to carry on the bus. James attached and labeled different sized spheres on a big piece of black foam core to represent the solar system. As we walked into the school Ben's teacher saw me and with a big smile asked how he was doing. Being a smarty pants I replied, "He's doing really well. You can ask him yourself." She turned with an even bigger smile. I think I saw her hold back an urge to run and give him a really big hug. When she reads this she can tell me if I was right or not. Teachers hugging students is often not appreciated these days and knowing that he has 8" incisions in his rib cage that are still healing make hugs a little scary. I am sure that if I was right it was the mostly the latter reason. We have actually offered to give key members of the schools staff and administration written permission to hug the boys.

  Ben is home now and the school day was wonderful. Instead of looking tired and exhausted Ben seems to be recharged. I have a feeling the energy of the other kids and the building itself invigorated him. He knows he can go to the nurses office and rest if he needs it. He knows he has resources to help if he needs it and that gives him great comfort. We are told that he is working really hard to just be a good student and citizen of the school. James seems to have an extra spring in his step too. When Ben is in the hospital he seems to withdraw a little and get a little cranky. I must admit I do too. I am not sure if it is Ben's being in the hospital itself or the increased stress on the adults around him that cause the changes.

10/15/2008

 I was about to update the page saying that Benjamin had the last chest tube removed today and would probably be discharged by 6 PM. I talked with Stacey earlier and she said he was running around and that he had gone to visit the other sections of the hospital he is usually in - D7, C& and the clinic. He was also chasing the remote controlled hovercraft that the child life specialist had given him. All that in addition to wreaking havoc upon nurses and residents with the Fart Machine that I brought to him last night. Stacey called me 5 minutes ago (4:15 PM) to tell me that they had just arrived at home. Everyone is thrilled and he is feeling fine. The locations of the tubes and incisions are still ouchy and we will have to change the dressings periodically until they heal better. I don't think he will be going to school tomorrow. We will try to get a hold of his teacher to see if she thinks it is ok for him to come on Friday if he is up to it. We don't want to disrupt class and we have to figure out the whole tutor thing. We just don't want to push him too hard and let it be his choice right now. The school nurse and all of the teachers and staff are amazingly supportive. We know he will be in good hands. If he tires he can go to the school nurse and she will let him rest for a little while before either sending him back to class or calling us if it is necessary for him to go home. We know that the school counselor is there for him if he needs/wants to talk with her about anything school or life related. We also know that the school has an advocate that is looking out for him too. All that in addition to the teachers who want nothing more than to see Ben and all the children succeed and overcome the obstacles life puts in there way. Ben's obstacles are just a little more apparent and well known these days.

HE IS HOME!!!

10/14/2008

     Sometime during the afternoon yesterday Ben was taken of oxygen assistance, IV fluids and pain medication, and suction. His chest tubes remained in place. Last night was relatively uneventful. He woke up several times because of nightmares and pain. The chest tube on his right side is towards his back and when he is laying flat he is putting weight on it. It hurt him, but, he was toughing it out with only Tylenol every 4-6 hours. Around lunch time today that tube was removed. In addition one of the chest tubes on his left side was also removed. So he only has one tube still connected. The new found unencumberance has made him a very happy camper.He has gone for several walks around the facility. He has to stay on the 7th floor though. I haven't heard if he participated in the 2:30 activities hosted by the child life specialists each weekday. I do know that when the tubes were being removed he requested to have one of the child life specialists there by his side. The tubes are very long and it is not a very pleasant experience. The child life specialists are wonderful and they are the one adult person that the kids can count on being impartially by there side. It is a very unique neat experience. Ben knows that Stacey and I want the best for him. He also knows that we will be there coaxing him to do what the doctors and nurses are trying to do. The child life specialists are there for the child not the procedure. Something I am not sure a friend or relative could easily do. It is a hard concept to explain, but, it is magical to watch and AMC has wonderful child life specialists. The child knows that they will never poke, prod, stick, or do anything that will cause any pain to the child; they leave that up to the doctors, nurses, respiratory therapists, radilogists, patient care assistants and parents. Needless to say Ben had a friend and advocate by his side. Ben is doing great and the other tube should be removed tomorrow and then we will be heading home after they are sure there are no problems.

  He may even make it to school this week after all.

10/13/2008

10/12/2008

  Ben is improving. Today he was removed from an oxygen system that provided mild assistance with each breath. He is now on the more typical oxygen therapy that consists of the tube up the nose like in the movies and on TV. He was able to go for a walk in the hallway today and his chest tubes should be removed on Monday or Tuesday. I will give you all more detail later on tonight. Suffice it to say he is working hard to get home as soon as possible and things are look positively.

10/10/2008 Part 2

   It is 10:10 PM on 10/10 as I am starting to write this update. I just thought that was kind of cool. Ben is doing great. He is resting/sleeping very deeply. Stacey said he had a very exhausing day and worked really hard. It shows because his stats look great. Here is a photo I took with my phone of his stats for prrof. Anyone who has seen him this week or read the other posts knows what an improvement this is. Thetop is heart rate - next is respirations - then blood oxygen level and then his blood pressure. Since it is Ben's data I don't believe I am violating HIPAA and I have actually read the regulation. Don't ask.He is resting well.

10/10/2008 Part 1

   Ben is doing well today. Yesterday in the late afternoon we had a bit of a scare. Stacey called me at work around 4:30 and told me that I should come and see Ben before going and picking up James. Ben was scared and his blood oxygen levels were in the 80s, he was working hard to breath and his heart rate was really high. She thought I would help as he was recovering from an incident. He had started to gasp and couldn't catch his breath. He was saying in a panic that he couldn't breath in between gasps for air. Nurses, residents, a respiratory therapist and the docotor in charge of the PICU came quickly to his room - without being called. They checked the hoses on the chest tubes to make sure one of them wasn't detached or otherwise leaking. They adjusted his oxygen tubes and the volume available to him through the tube up his nose. It was a hive of activity and he stabilized. They then hooked him up to a machine that forced air into his lings. It assists him with breathing by pushing extra in when he inhales. It is rather painful and uncomfortable. He is still doing chest PT and periodically using the new machine to make sure he is filling his lungs as much as possible. He receives respiratory therapy every 3 - 6 hours. I stayed at the hospital until around 7. When I left he was doing great. His blood oxygen levels were 96-98% and his heart rate was in the high 130s. He was breathing better and more evenly. His color was great and he was talkative. We talked about David Ortiz and all of the comments people had been making on the web site. He was in a great mood considering he had just had the wits scared out of him earlier.

     It was nice not having to worry about James during this time. He spent Wednesday night with Stacey's Aunt Carol and she dropped him off at Siena around lunch time. James was with Coach Howe until I picked him up after 7. He shadowed her through a class and was able to swim with the water polo team. They also worked out in the weight room. He hung out at poolside and in her office that is adjacent to the pool. The water polo team is a great group of young women. He loved it and it was nice to be able to let him be the center of attention. Soon after Aunt Carol dropped him off Coach Howe called me just to let me know that she had him and he was in good hands. She told me, "I hope you don't mind, but, I'm really spoiling him." Before I could say anything I hear his voice in the background, "It's OK. You can spoil me." I told he was right and she could do what she thought was appropriate. She and the water polo team showered him with just the right amount of attention for the day. 

  By the way I am really excited about my new job. I found out today that at least one of the things we are working on here is a treament for osteosarcoma. To use Ben's words to one of the nurses, "My Daddy is trying to get a job with a company that wants to cure my kind of cancer. Isn't that great." I don't think they realized in the interview process just how motivated an empoyee they were getting.

10/9/2008

    The chest x-ray this morning showed improvement over last nights x-ray. His right lung is looking great. Last night when I looked at his chest x-ray his left lung was not even really visible. A healthy lung shows up mostly black on an x-ray. There were very few areas of dark gray. The chest x-ray this morning had areas of black and gray. The momentum has started to shift. He is working really hard. He is receiving chest PT every 3 hours. It consists of pneumatic thumper that they run over his chest and back for 15-20 minutes. It is not pleasant. When they started to do it the first time he asked the nurse, "Are you sure you want to do this?" When I was there last night he told the nurse to avoid his chest tubes.  He has 3 chest tubes (1 right, 2 left) still in place. They drain unnecessary fluids, that are a result of the bodies reaction to the surgery, from his chest. They are draining nicely. He is also receiving some occupational and physical therapy to make sure he isn't losing any muscle function while being confined to bed and chair. We are looking to get him moving around more. His port was accessed today so the IVs in his hand and arms will be removed. It really unnerves him to have them in place and it is also uncomfortable. All of the hoses and tubes running in and out of him really limit his mobility - both physically and psychologically. He is afraid one of them is going to get pulled on.

   Last night he had a special visitor. Lisa, the woman who made the meeting with David Ortiz possible, stopped by to check on him. She is heading to Boston for another event and wanted to see if she could get Ben anything. He was really out of it and not very communicative at that point of the evening. He really didn't give her much to go on as far as something he would like from the Red Sox. Later on she asked him about football and he was more verbal. He told her he would love a signed football from Eli Manning. The big news that made him crack a little smile was when she talked to him about David Ortiz. The whole time she was visiting he was sitting up in an uncomfortable chair at best with tubes coming out of him and 6-8 inch incisions between his ribs from Monday. She told him that David's agent has been in contact with her several times asking about Ben. He told her that David has the picture they sent him with David signing Ben's head hanging in his locker area along with the bracelet and pin Ben gave him. There is no way the bracelet could fit on his wrists. After Lisa left Ben was a littel more talkative and said with as much excitement as he could muster, "Daddy, do you believe it? David Ortiz has a picture of me hanging in his locker." I'd love to see that. We are thinking of printing out 2 copies of the picture and having Ben autograph both copies and send them to David. We'll ask him to sign both of them and then send 1 back to Ben.

10/8/2008

   It was a long night for Stacey last night. His heart rate has come down some and is not really a concern at this point. He seems to be managing and communicating about his pain levels. He is having difficulties with breathing and keeping his oxygen levels up. They have taken additional x-rays and one of his lungs has collapsed. They are trying to assertain why and develop a plan of action to get it re-inflated or help Ben's body re-inflate it. Ben is in a great deal of discomfort, but, not necessarily pain. There are 5 lobes in your lungs and it is one of the large ones that is having difficulties. It is on his left side.

Right        Left

  I stopped by the hospital this morning on my way to work after dropping off James at one of his friends houses. Stacey didn't sleep at all last night. Ben was receiving a red blood transfusion and was thrilled to see me. It was a surprise. He and Stacey thought I would be going straight to work. I washed his face and talked with him. He was sweaty from the effort it takes for him to breath. He was able to talk though. My mere presence seemed to make his vitals improve - Daddy power. I brought him his Healing Buddha and he took it into his hand and thanked me. I also brought him a postcard and letter from his Chemo Angels Kasey and Julie. He smiled a big smile as I showed him the postcard and then promised him that his mother would read them to him. He is thrilled that the Red Sox won and are moving on closer to the World Series. Stacey walked me to the elevators and we talked about our brave boy Ben and the situation. He is in a dangerous place right now and we need him to turn a corner and start some momentum in the right direction.

10/7/2008 Part 2

  Ben is doing better. His heart rate has come down into the 120s. Throughout this his blood pressure has been ok. His respiration rate are all over the board, fluctuating between 30 per minute up above 60. When he sleeps they are slower and slightly more rhythmic. Overall he is doing well at this point. The surgery is a huge surgery. Imagine having an 8" incision made between 2 of you ribs and then having your ribs spread apart so an adults hands could reach into your lung cavity. It is no wonder he is some pain and discomfort. They are working on managing it, but, it is hard because he tells us that he is only experiencing pain of 2 on a scale of 10. We are also thinking that a good deal of the rapid heart rate could be anxiety. He has admitted to us that he is scared. I know last night and this orning he was telling me he was afraid the doctor who had no bed side manner would be coming to see him. To be on the safe side they have taken multiple chest x-rays and cultured his urine and blood to make sure there is nothing growing inside that shouldn't be there. Stacey just told me she thinks she is seeing small improvement moment by moment throughout the day. Ben is doing really well.

10/7/2008 Part 1

   It is almost 4 am and it has been a long, mostly uneventful night. It has required attention because Ben's heart rate has been high all night. Between 10 and 11 PM it started trending upwrds. It was topping out at 160 beeats per minute. Between 11PM and 3 M I never saw it below 155 beats per minute. His breathing has been rapid and shallow. He keeps insisting that he is not in pain. One time he told the residents and nurses, "I'm not in pain. I just need more fuids." As ti turns out he is in pain and wouldn't admit it because he is scared of the doctors. One of our favorite residents and I were able to get him to tell us about it. I had to remind him he could trust her. Ben told me he was scared because it was starting to look like the last time he had this operation. I explained that he would not be speaking with the mean doctor. The resident commented about my encouragement directed towards Ben and thanked me for telling Ben he could trust the doctor. They ncreased Ben's fluids and added Tylenol to his morphine and his heart rate has been in the high 140s. Ben is doing really well and I am going to close my eyes now.

10/6/2008

  Ben is in the recovery area right now waiting to go up to the PICU - Pediatric Intensive Care Unit. The surgeon came out and talked to everyone and said that Ben had done wonderfully. One side had 9 nodules removed and the other 14. I think Stacey said they ranged in size from the size of a grain of sand to the tip of a thumb. The nodules have been sent to pathology for testing - some of them may be scar tissue or other anomolies. I will update more from the PICU tonight. I will be doing the overnights as usual.

 10/5/2008

  Today was a great day. It started with the boys getting up really early. They were both excited to be going to church. Today was Pet Blessings Sunday in honor of the Feast of St Francis. They wanted to make sure Mocha received a blessing from David. She was wonderful throughout the service and received her blessing. After church we dropped Mocha and James off at home. Ben and I followed our tradition and headed to the Circle Diner for breakfast. We were late, but, it didn't really matter because they serve breakfast anytime. Ben always gets pancakes and I always get 3 eggs homefries and toast. The only question is whether or not he gets a short stack or a full stack. As we arrived at Circle Diner and headed for the dorr we noticed a group of about a dozen people standing outside the restaurant talking. It is not uncommon to see people enjoying a beautiful day and keep there conversations going out in the parking lot. I immediately recognized 2 of the people standing in the group. One was Brendan, they young man who is a student at Siena and an Osteosarcoma survivor. The other was his mother from California. You may remember that they dove from the Los Angeles area all the way to San Diego to visit Ben when he was in the hospital out there. Here they were 1/10th of a mile from our house. It was parents weekend at Siena. Up we stroll like we own the place and say hi. What great timing? We talked for a while and were able to meet the rest of the family. Dena was thrilled to see Ben. She said, "Ben, you are looking so much better than the last time I saw you." It was really cool to have that happen. Ben and I talked a great deal during our breakfast. He thought that running into them was just one more part of a great day. He told me that he was scared about the surgery tomorrow. I explained that it was understandable for him to be scared. He also said that he wasn't worried, just scared. He has told us before the thing that scares him the most is the catheter. We also talked about how he was going to stay in the area when he grew older so that we could always keep coming to the Circle Diner on Sundays for breakfast. He told me when I am an old man he will pay for breakfast. He is a little disappointed that I won't be there in the hospital during the surgery tomorrow. Tomorrow is my first day at my new job and I need to be there to make sure our health insurance from there starts tomorrow. It starts on day 1. My new employer is not aware of Ben's surgery. We discussed it and didn't want to put them on the spot on the first day. Miss Kathy is going to be there in my place and Ben said that was ok with him. There will also be a few other people showing up too. The surgery is scheduled to start at 10:10 AM. We will have him down there at least an hour before. I will be doing the overnights as usual. I will update everyone as we go along. We have things lined up for James tomorrow and Tuesday. We are still working on Wednesday and Thursday. Thursday is the tough one because there is no school on Thursday. We have some ideas so don't be surprised when we call you.

   While we were eating diner tonight a woman came to the door and I think she rang the bell. At the dinner table my back is to the door. Stacey's Aunt Carol had noticed her come to the door. She opened our glass front door (the inner door was open already) and said."Please don't get up from the dinner table. Here is something for Ben." I of course was getting up from the table anyway and heading for the door. She was already halfway back in the car when I got to the door. I waved a big wave and we smiled at each other. I didn't even get a chance to thank her. I looked down at the floor and there was some money that she had layed there for Ben. I looked back and they were driving away. Ben thought it was cool because he saw toys. We explained to him that it would be going into the Ben fund to cover other things - he agreed. People ask us how we are so strong. I know it sounds like a broken record, but, we are strong because of you. Things like this happen and you just know there are angels in this world. Each of us has opportunities to be angels for other people and we are blessed with seeing actions like this on a regular basis. Notes of love and encouragement. A childs allowance money is left in the school office for the Ben fund. Someone stops by to take care of the dog when we are too busy. Everyone watches out for James when we are forced to focus our attentions on Ben. A lifelong friend stops me in Target and gives me an opportunity to just talk and reminds me how strong we have been for the past 2 years. 

   Stacey's garage sale never took off this weekend. The weather was looking iffy and as she was setting up one of the long time residents of our neighborhood rolled up and put the squeeze on her for protection money. Seriously the really nice, neighborly woman showed up to tell Stacey that next week is the neighborhood garage sale and that it would be better for her to wait another week. So we have blue tarps in the driveway for another week. I have almost emptied the storage shed and we have lined up most of the holiday decorations from the basement to go out. So next weekend is the big garage sale. Our hope is that Ben will be home for it. He really want to be home on Friday so he can go to the Fire Prevention event at the SW Pitts Fire House Friday night.

  So everyone is sleeping well and the weekend was great. Tomorrow is going to be a very long day and we know that all of you are with us and with Ben.

10/2/2008

  Since my last update on here not much has happened in our lives. We have been getting up early and catching the bus to school. We have been experiencing a level of normalcy that we really haven't experienced in a long time. It has seemed that we have been spending the last 2 years trying to figure out what was next. Although we present a good face to the outside world inside Stacey and I have been scared to death at times on the inside. We haven't hid anything from the boys or from you, but, I still have not been able to find the words to describe those moments of terror and worry. We have often been trying to cram in a great deal of extra life into our families time. Since my last posting we have done nothing that was not part of our normal pre-osteosarcoma routine. There have been a couple of doctors appointments and Ben did have a couple of scans, but, overall we have been a bit withdrawn and sluggish. Doing small things like extra cuddling, working on homework, playing video and other games. We have slept in on the weekends and gone to bed early during the week. This weekend Stacey is having a garage sale of the stuff we have accumulated in our garage, storage shed and basement. We have taken this opportunity to rest before a coming storm of an operation and a new chemotherapy regimen. Many of you have been helping us as we regain our momentum. Through your cheers and support the ifosfamide did its job and worked. The tumors in Ben's lungs have been reduced to the point where his lungs are now operable. Ben's strength has grown and he is ready for the next steps. Our resolve has grown and we are ready to stand our ground and move forward into a new phase of this journey into more unkown territory. It is through the support of all of you that our family has been able to maintain our courage and strength to the levels that we have needed to move forward. Reminding us to focus on the positive when all we can see is negative.

  Ben's bilateral thoracotomy has been scheduled to take place on Monday morning. We have been told that Ben has a "handful" of tumors in each side of his lungs. Stacey asked for the exact number and we were told around 6 or so. We are waiting for the surgeon to call back so we can discuss the surgery with him before Monday. The surgeon who will be doing the surgery has been inside Ben's little body 4 times now. It is actually a little comforting that this will be his 5th time. It's weird, but, it's like he should be getting familiar with where all the parts that should be there belong. After the surgery Ben will be in the hospital recovering for about a week. After he recovers from the surgery he will be starting a new chemotherapy. He will be receiving it as part of the FDAs "compassionate use" classification. He does not fit into the criteria for him to participate in a clinical trial for the L-MTP-PE. The first 2 rounds of the treatment will be taking place in Houston, TX at MD Anderson Cancer Center. We just heard that they are giving it at Sloan Kettering in NYC so we are looking into going there. A train ride seems a lot closer than a plane ride. We haven't found out yet whether or not our health insurance will cover the costs because of my employment change we haven't submitted the request. We will be covered under the new as of my first day of employment - Monday. We are still covered under our current policy until the end of October. Thank you all so very much for the support you have given and continue to give.

   So many of you say that you haven't done anything or much to help us. Just knowing you are there lifts us up. We know that there is a whole team of people ready to act to do whatever it takes to get Ben through his battle.

9/24/2008

  We have been having a great time since the game and meeting David Ortiz. Thank you all for your celebratory emails and guestbook updates. Ben has been living the life of an excited 8 year old third grader. He is up and dressed and ready for the bus on his own. He even started making his bed this week. The boys are enjoying school and we received a note home from James' teacher saying is working hard. On Wednesday Ben had another set of scans done. He has been scanned many times recently. The 3rd round of chemotherapy with the ifosfamide made a difference. It looks like one side of his lungs may be clear. There weren't any tumors visible on that side. The other side had less than a dozen tumors visible. What a difference since the beginning of the summer when his lungs seemed over run with tumors. His lungs are operable now and we are looking at the next steps. He will be having the same lung operation he had earlier this year - a bilateral thoracotomy. We need to make sure that his lungs are clear before the next chemotherapy starts. We will be talking to the surgeon next week to discuss options. We have been looking at alternative techniques to the surgery including a laser surgery that is only done in Europe at this point and a technique called cryoblation which is done at John's Hopkins in Maryland. You will here more about these options after we speak with the surgeon.

  After the surgery Ben will start on a chemotherapy round that will be centered on a drug called Mifurmatide or LMTP-PE. It is given with either GM-CSF or a drug named Cytoxan. We need to speak more with the oncologists about which one Ben we will pair the LMTP-PE with for him. The chemotherapy will eventually be given at Albany Medical Center, but, it is looking like Stacey and he will be travelling to MD Anderson Cancer Center in Houston Texas for the first couple of rounds. We are a little nervous about this, but, Ben is being very brave. We will probably all go down for a weekend before and then James and I will come home. We are not completely sure on the timing of this. We think he will be in Houston for two weeks...home for two weeks and then back again. When he starts the chemotherapy depends on how long it takes him to recover from the surgery. As we find out more I will post it on here. The good news is we will most likely not be heading for Houston until hurricane season is over.

   To complicate matters a little I am changing employers. My first day will be October 6th. The boys are very excited about the job. My present employer has been very good to us and I am very thankful for them. The reason the boys are excited about the new job was highlighted in a discussion that we had when I was taking them to Noogieland at Gilda's Club on Tuesday. Out of nowhere James turned to me and said, "I'm glad you are getting the new job." I asked,"Why James?""Because the company you will be working for is trying to cure cancer. You know you need to cure cancer. Ben could die from cancer, you know." Ben chimed in,"He's right Daddy my cancer could kill me." I replied,"Ben we are doing everything we can to make sure that doesn't happen and we have a great team of doctors that is working with us." James said,"And you are working to cure cancer." We talked a little more and I explained that the company I am going to work for is working on things and making things that help people with many diseases. To which James asked me if they were helping people with diabetes like Joe Jonas - I think he said Joe. By the time we arrived at Noogieland they were running around and the conversation was behind them. It was fun time. I couldn't help, but, think how many adults would be deprssed for a day after that conversation. Kids are amazing. People often ask me if the boys know what is at risk. I always tell the folks that ask that we have not lied or hid anything from the boys and that the boys do know. The conversation in the car demonstrated to me that they really do know what is at stake.

  I still have to pass the drug test...

9/15/2008

9/14/2008

   I must start his post by telling you all that this past weekend was one of the most memorable, happy weekends our family has experienced in a long time, if not ever. We laughed a great deal and enjoyed each others company. I saw Stacey cry a little at least once and I shed tears a couple of times. I hope you have some time because I think this is going to be a long one.  

  We had breakfast at a restaurant that is in a storefront type space on the first floor of the hotel. As is often the case in large cities the first floor of the Hotel Commonwealth is made up of storefronts at street level and the first floor of the Hotel is actually the 2ndstory. In fact the entrance to the Kenmore Metro stop is in the center of the almost block long hotel façade. The Metro is called the “T” in Boston and is basically the subway system. If you ask for directions to “The Subway” you will either be given directions to a sandwich shop or told you have to go to NYC for that. The Kenmorestop is the stop everyone uses to take mass transit to Fenway Park. Breakfast was really good and our waiter had a very distinctive accent. It sounded Brazilian to me. James hadheard that everyone in Boston spoke with a very strong accent so he was listening intently to find it. We had not encountered anyone yet with a Boston accent. When the waiter brought us our meals James asked him, “Excuse me, do you have a Boston accent?” The waiter asked him to repeat his question and then laughed, “Nobody has ever asked me that.” He kindly told James that he was from Columbia and that people usually asked if he was from Spain, Brazil or Portugal. He was really sweet with James and I am sure he now has a great story to tell. He recognized us when we went there for breakfast on Sunday too.

   During breakfast we decided to go to the Aquarium and then the Museum of Science. E took the T and the boys really enjoyed taking the trains. We had to switch from the Green line to the Blue line to get to the aquarium. Our stop was right there when we arrived. Hen entering the aquarium building we were first directed to a side exhibit area that contained a jellyfish exhibit. It was very dark, but, seeing the different jellyfish was absolutely amazing. He movements of the creatures was otherworldly and beautiful. The boys went from one tank to the next excitedly describing to us what they were seeing. Some of the exhibits were interactive and you could change the colors of the lights to see different parts of the jellyfish. As we finished the exhibit and entered the main part of the aquarium building I turned to Stacey and said, “That alone was worth the price of admission.” We walked into the aquarium proper and the first thing we saw inside was the penguin exhibit. The boys absolutely loved seeing the penguins. When we were in San Diego one of the biggest disappointments for James was that he never was able to see any penguins. Ben pointed that fact out to James and said, “Hey, now we got to see the penguins together.” After watching them for a while we walked around the huge central aquarium tank. It is a giant cylinder and the walkway spirals around it in a gentle incline. I would guess it is at least 4 stories tall. The boys called out the cool things they were seeing. The highlights were a shark and a sea turtle. We also walked around looking at the other exhibits. We found a reef tank that had multiple species in it and contained almost every type of fish in the movie “Finding Nemo” and then some. It was really neat watching the boys interact with the exhibits reading the signs to us. Ben found one that contained Cephalopods and I explained to him that Cephalosporins were not related to the species. At least I don’t think so.  Remember he is allergic to the Cephalosporin class of antibiotics.  As we were looking at the Cuttlefish in the tank a gentleman told the boys to wiggle their fingers in front of the tank at the creatures to see if they reacted. The boys did and the cuttlefish changed colors and even flashed a little bit. It was really neat.

  Then we went to an I-Max 3-D movie about the Colorado River and the Grand Canyon. It followed a rafting trip through the canyon as it looked for changes in the river over the last century. It was amazing to see the differences that the dams and farming has made to the river. Of course the most exciting parts were when the rafts and kayaks went through the rapids. We decided after watching the movie that we are going to take the boys rafting on the upper Hudson river next spring. James wants to learn how to kayak now. Ben prefers rafts. I am up for anything and I think Stacey likes the shore.  

   After we finished the movie we did a quick walk through the gift shop at the aquarium and talked James out of buying a Squirmle type toy. We ended up saving the souvenir budget for a later purchase. We had a great time at the aquarium and talked about saving the rest of the aquarium for a later visit. We decided that instead of taking the T to the Museum of Science we would take a taxi so we could see more of the city and just to do something different. Our driver turned out to be a wonderful man. I sat in the front of the cab and Stacey and the boys were ion the back seat. Our driver had been driving a cab in Boston for the past 18 years fulltime and part time for a number of years before that. As we all climbed aboard he said, “Once upon a time or maybe twice there was an unearthly paradise called Pepperland.” and turned on the CD player in the cab. I was confused a little until I heard The Beatles song Yellow Submarine begin. He turned to me and said, “I thought the boys might like this one.” As he drove away from the Aquarium I knew the boys were a little hungry for lunch so I asked if there wre any nice restaurants near the Museum of Science. He immediately said no, thought about it, and said, “No, come to think of it there isn’t really much of anything right there.” Stacey and I looked at each other and decided there had to be a snack bar type restaurant there. As he drove he talked to us about playing keyboards in a band, studying at Harvard, the sites we were passing and the interesting people he had had in his cab over the years. He talked of freedom and how having kids would probably have changed his life dramatically, “I would have probably grown up immediately.” Stacey and I both think he was a little older than we are. He spoke of movie stars, rock musicians and Nobel Laureates. Our favorite story was that Ted Williams had been in his cab. He described him as a nice man who tipped well. Unfortunately, he told us that he was absolutely tongue tied and couldn’t think of anything to say when Ted Williams was in his cab. I thought to myself. “This guy can talk about anything to anyone and Ted Williams made him speechless.” He spoke of Ted Williams with awe and reverence. Since everyone was in baseball mode talking about Ted Williams and Boston baseball was a favored topic. It wouldn’t be until later that day that I realized why he was almost choking up over that ride with Ted Williams. We arrived at the Museum of Science with smiles on our faces. As I paid him the fare and gave him a nice tip for making the ride pass so quickly and entertaining us. He looked at me with a look of concern and love, “I wish the boy well. I don’t know you, but, I will carry him in my heart.” As I had pulled the money out of my pocket one of Ben’s Green Drakkoman buttons had fallen to the ground. I bent down and picked it up.  Handed it to him and said, “Here, this is a picture of the super hero my son Ben created that is helping him. Thank you very much for the memorable ride.” As I closed the door and turned to walk away I noticed that the money was just sitting on the seat of the cab, uncounted, and he was just looking at the little button rubbing it with his thumbs. The image of a monk in prayer popped into my head.

   We had a great time in the Museum of Science. The food was very expensive, cafeteria, museum snack bar food. It wasn’t awful, but, very ordinary. Ben and James had hot dogs. As Stacey and I were working on our lunches Ben spontaneously erupted and the majority of his lunch came right back up onto the tray and table. It happened so fast and silently that I don’t think another soul in the relatively crowded dining area had any idea what had just happened. Except a single mom sitting across the aisle to my left. Stacey quickly wiped it up with the abundance of napkins that we had on the table. We didn’t make a big deal although Stacey and I were both screaming inside. Ben assured us he was ok and that he must have eaten too fast and that he was really excited. We decided that since this was the first and only occurrence we wouldn’t panic. He seemed perfectly fine so close monitoring and no running around would be the order for the afternoon. We went through some of the exhibits in the museum that involved optical illusions. They were really cool and the boys were reading the instructions and trying the experiments. There was a butterfly exhibit going on that we had purchased tickets to enter. They were timed tickets and depended on how many people were in the room at a time. It was a light day so we were able to enter early. The room was filled with plants that fed different butterflies. They also had some fruit on plates. There were hundred of butterflies flying around the greenhouse type room. We walked around, stood still and sat on the benches for a while. I think we were in there for almost 45 minutes. It was really cool to see so many different butterflies. There were butterflies the size of quarters and butterflies the size of saucers with every size in between. We were all hoping one would land on us. We were not allowed to touch them, but, they could land on us. I was holding the video camera when one landed on it. Another time one of the biggest butterflies landed on my finger while I held the video camera. Of course it was the hand holding the camera and Ben didn’t see it in time to get the picture with the digital camera. We all agreed it was really cool to be surrounded by butterflies.          

   Next we walked through a couple of exhibits as we headed to the Lightning show in the Theatre of Electricity. I saw this show 20 years ago and I think the same man was doing it then. We were both much younger. The show has the worlds largest Van de Graff generator and some other devices like Tesla coils and Jacob’s ladders in it. It is very loud and there is a great deal of lightning. It is wonderful and the science just presents itself. Here are a couple YouTube clips that other people have online form the same show on different days. The second one is the grand finale of the presentation.    

http://www.youtube.com/watch?v=IJSNiDbob6Q        

http://www.youtube.com/watch?v=MxeLOI_kp_o        

   They also talked about Ben Franklin and made young girl’s hair stand on end. Ben stayed and asked the presenter about the Tesla coils. After the show the gentleman also passed out sparks. Ben, James and I took turns and stood there with our fists up in the air. The gentleman punched the air above our fist and a giant spark arched between our fists. The boys both jumped because they didn’t know what to expect. The interesting thing was that because they jumped they felt it in their feet too. It was a very massive spark about 100 times greater than you can generate on winters day rubbing your stocking feet on the carpet. Awesome!!! We spent the rest of the afternoon learning about many other things. We moved from exhibit to exhibit like we were browsing a giant science buffet. The boys would be interested in one exhibit for 10 minutes and then fritter past 5. We just let the boys control what interested them. James and I would sometimes go one way and Stacey and Ben another. The boys would get back together and show the other what they found that was interesting. We had a great time and left more to explore for another day.            

   We took the T back to the hotel and decided that everyone would take it easy for the evening. We picked up a Playstation 2 with a couple of games and DVD from the front desk for the boys to have in room entertainment. I cannot say enough about the Hotel Commonwealth. It is a wonderful boutique hotel and our room overlooking Fenway Park was only about $50 more expensive than most of the good hotels in Boston. If you are going to a Red Sox game and want to walk to Fenway it is definitely an option to consider that will make it a really special trip.         

   While Stacey and the boys were hanging out in the room I went on a walk to see how far away the Gate was that we were to meet Lisa at on Sunday morning. I walked to Fenway Park and it was a pretty easy walk. I knew the boys could do it with no problem. I arrived at Gate A in no time and asked a nearby police officer where Gate D was. He told me which direction to go and off I went. There was a game that was starting 7:30 and even though it was a little before 6 PM the crowd was inspiring. I ended up walking all the way around the outside of Fenway Park. I think the officer thought I said Gate B or thought I was a Yankees fan. I am glad that he sent me around the park because I probably wouldn’t have stumbled on the statue of Ted Williams. I realized as I looked at the statue why our cab driver had choked up earlier. I knew that the Red Sox have supported childhood cancer research through the Jimmy Fund since 1948. I had also heard Ted Williams in connection with the Jimmy Fund at times. I turned the corner and there was Ted Williams putting his ball cap on a little boy with the number 9 on his back. The little boy is smaller than Ben.

  I thought I did not have to read the plaque to know what I was seeing. I noticed the reverence of many of the fans towards the statue. I overheard a woman say that she visits the statue every time she comes to a game no matter where her seats are. I saw an older gentleman gently touch the little boys head as he walked past. I watched a man pick up his kids to stand on the granite and pose between the boy and Ted Williams so he could take a picture. I heard his youngest (6 or 7 years old) ask, “Why is the boy bald?” As they walked away I heard the man begin to talk about the Jimmy Fund and wondered where that conversation would take them. I cried a couple tears as I read the plaque that said that Ted Williams was known to visit Dana Farber and give the hat off his head to the children who were fighting cancer. I looked at the statue and I saw Ben.  

   I walked farther around the park and found Gate D. It was just down Yawkey St from Gate A and would have been easily visible if there were not trees, awnings and a couple of signe in the way. On my way back to the hotel I stopped and picked up Double Cheeseburger Happy Meal for James and a pizza for the rest of us. We ate and relaxed. Tomorrow was the big day.

I am working on Game day now…Coming soon

9/13/2008

   The ride was long last night. It was one of those nights where the roads seem to absorb the headlights and the roadspray was emough to keep the wipers going. As we approached Boston the other drivers became more and more aggressve and the lanes of the road narrowed. We decided that you know you are in Boston when the highway starts to feel like an amusement park ride. We arrived here around 10 PM and the GPS worked perfectly. We were all distrustful and looking everywhere for the Hotel Commonwealth - sign, something, anything. When the TomTom said, "You have arrived at your destination." the awning for the hotel was right there. The staff here is wonderful. The boys took forever to fall asleep and they were up at 7 AM. We are off to breakfast and then heading to the aquarium and one of the museums. We will decide at breakfast.

   Our room overlooks Fenway Park -

9/12/2008

   We brought Ben home from the hospital yesterday afternoon. He absolutely breezed through the 6 days of extremely high dose Ifosfamide chemotherapy. I mean breezed through it. He ate wonderfully the whole time. He walked the halls and went to the playroom everyday. He enjoyed the activities. He roamed the halls with a gorilla mask and furry hand gloves - startling the med students, interns and doctors. The nurses were somehow unflappable. I do have video that I will be getting up on Youtube of him with his mask on.

 The first thing he wanted to do when he left the hospital was to go to Circle Diner this trip. Usually it is Friendly's that he craves the most. I think he misses some of his favorite waitstaff that have moved on. After James came home from school I took the two of them to Guptill's Arena and Coney Island - although the real name is Coney Express.

   Ben's 3rd grade class sent home get well cards yesterday and they were really touching. A couple of them even managed to get some adult tears flowing. Many of them said that they hoped to see him on onday. Well, Ben was bouncing off the walls last night because he was going to school today. He couldn't wait to surprise them. Last night the boys took showers and made themselves ready for bed. Ben came into our room and said, "Ok, I'm ready for bed." I looked at him and laughed. He was completely dressed with the exception of shoes. As I escorted him to his room I asked what was going on. He replied, "I'm ready for school. I won't have to waste any time in the morning. I'm already dressed." We laughed together and I talked him into sleeping in his underwear. Needless to say when he woke me up at 6 am this morning he was completely dressed. He ate breakfast. Made sure his backpack was ready and was sitting on our front porch at 7:30. The bus doesn't come until 7:50. I am sure he and his classmates are having a great day.

   We also received a note home yesterday from the school counselor. It seems James went to her on his own and asked if he could set up the same arrangement he had last year with her. A standing appointment once a week to drop in and chat if he feels he needs to talk with someone and the opportunty to drop in or catch her in the hallway as needed. She sent home a note and permission slip for us to sign authorizing her to provide counselling to him. It was a lovely note formalizing the arrangement. We are so proud of him for using his resources to set up his own support system. We made sure to tell him how we felt. It can not be easy to be in his shoes these days. He is a great brother and friend to Ben, as Ben is to him.

   We are heading to Boston tonight and staying at the Hotel Commonwealth. It is the nicest hotel close to Fenway Park. We will be heading to the park on Sunday around 11 am. Ben will be meeting David Ortiz on the field. We are hoping they can get James on the field to, but, it still has not been confirmed that he will be able to be on the field with Ben. I guess there are liability issues or some other red tape. James tells us he understands and Ben has told James that he will talk to David Ortiz about the situation when he gets on the field. Ben also is planning on bringing an autographed photo of himself to give to David. Tomorrow we are going to go to the aquarium and/or one of the museums.

9/8/2008

  Ben has done very well on the chemotherapy front this trip. If he was in a trial I would think he was getting the placebo. We haven't seen any side effects this trip. We are in a section of the hospital we have never been before. The food seems to come up warmer, but, the sleep chairs are just as uncomfortable.

   Ben is receiving the drugs through his port-o-cath. So each morning around 9 am an IV bag is hung with the drugs in it. The IV bags are prepared in the special chemotherapy pharamacy at the hospital. On Sunday Ben's chemo showed up with a little something extra on the back of the bag.

  We often don't think about everyone involved in Ben's care. One of Ben's nurses knew we would be curious and she found out the story for us before we even asked. The chemo-pharmacists get to know the patients through the drugs they prepare. They learn about the kids through web sites and news stories. I can imagine as they prepare the drug cocktails to be delivered they often think about the well beeing of the patients. I can imagine myself saying a little prayer that the drugs be effective and the side effects small if I were in their shoes. The gentleman who prepared this bag saw Ben on news early one Saturday morning. He decided to prepare a special bag for Ben and looked up the drawing on the TV stations web site. He practiced until he could reproduce the drawing and waited for Ben to come back for chemo. He prepared this bag with great care, attention and I dare say love. He told the nurse his hope was to put a smile on Ben's face. She explained to him that when Ben saw the bag he not only smiled, but, absolutely beamed with delight. I know he checks this web site so Thank you very much.

9/5/2008

  The week has been a good week filled with as much of a return to normalcy as possible. There was a little back to school shopping. Visiting with friends the boys hadn’t seen since school was out or baseball ended. I took the boys and a friend to the movies one night. We saw “Fly me to the Moon” in 3-D. It was actually a pretty good movie. The boys loved it and I found myself laughing several times. I also found it amusing to watch the boys reactions to the 3-D and even found myself reaching out to touch something. There were also little details put in the movie that were funny – like a computer chip labeled "In-Smel" instead of "InTel".

   The boys and I also had fun with their new 4 wheel scooter-skateboard things. I took a couple of rides to show them how to do it. Wow, I don’t know if I would have survived my childhood if these things had been around when I was a kid. They are a blast, but, it was obvious immediately that helmets and pads were not an option. They boys had a great time getting used to standing on them and pushing off with one foot then coasting a short time. As they get used to them it will be fun to watch what they do with them. When they get real good I’ll stop watching and just make sure they both know how to dial 911. Of course the boys are all padded up and wearing helmets. I am working on finding some comfortable body armor to help protect Ben’s right arm when he is playing sports or just being as active as he wants to be.

   Wednesday night was the night before school started. The boys were very excited. Their clothes were all picked out and their backpacks were stuffed with their school supplies. They had both already met their teachers and saw their classrooms. They both had baths. Bath time around our house is always a little funny. It starts with the water being drawn and with the boys being asked, “Who wants to go first?” Invariably neither one of them wants to go into the tub first. They are playing a game or watching a TV show that simply cannot be interrupted. As the water is ready I usually track them down and ask remind both of them the, “The first one gets the clean water.” At that point their previous answers are reversed and the first one to volunteer gets to go in. It’s not completely true because we do usually let most if not all the water out and freshen it between the boys. On at least one occasion after an exceptionally dirty, sweaty summer day I actually cleaned the tub between the boys.

   As they both lay in their beds they kept telling us that they couldn’t sleep. They were actually in bed by 8:30. We read to them. We tucked them in and kissed them good night. We ignored them. We talked quietly to them explaining they needed to get their sleep. We ignored them. We made sure the correct lights were on or off throughout the house. We ignored them. We cuddled with them. We ignored them. We closed the curtains and blinds. We ignored them. Finally, James came into our bedroom to let us know that Ben had fallen asleep. I thanked him as I escorted him back to his bed. It was almost 10. I explained to him the importance of getting to sleep as I gently tucked him into his bed and kissed him good night. I sat in the room with him and softly told him to keep his eyes closed and just relax. I could see that he was really tired because he was fighting to keep his eyes open. He was asleep by 10:30. It was so cute to see how excited they were about the next day. I think it was easier to get them to bed last Christmas Eve.

  The first day of school went well and the boys told us it was really nice to see their friends and that their new teachers are great. Although, Ben commented immediately that he still loved Ms Hock and Miss Kathy. We went to Applebee’s to celebrate and had a wonderful meal. We didn’t stay for dessert because we had promised the boys to take them out for ice cream. We went to a local ice cream place called “Coney Island.” Ben, Stacey and I all chose soft ice cream while James chose his favorite – Chocolate Chip Cookie Dough. As we ate our ice cream the boys and I walked to the adjacent roller skating rink – Guptill’s Arena. The boys really want to try skating and I think I will have to take them there one of these days. I wish I knew how to roller skate well enough to teach them. I’ll be the on with the pillow tied to my butt.

    Stacey, Ben and I finished out soft ice cream as we all piled into my convertible VW bug. The cone they gave to James was huge (ordered a small) so he was still working on it as we pulled out onto the busy Route 9. Traffic was moving rapidly as I entered the driving lane. The top was down so we could enjoy the warm fall night air. As I was speeding up Ben started laughing hysterically. James started screaming, “Make it stop! It’s melting! It’s going everywhere!” over and over. I couldn’t do anything because I was driving and the traffic was enough to keep me stuck in the fast lane. James was sitting behind me so I couldn’t see anything. I looked at Stacey as she turned to the back and saw that although she was concerned she was stifling laughter herself. The warm night air was melting his ice cream as it hit the cone and blowing the ice cream into his face and all over him. She told him to, “Lick the ice cream cone around all the sides faster.” I heard him say, “I’m trying, I’m trying.” I was trying to maneuver my way into the slower lane as she took the cone from him and handed him napkins. She licked the cone as he wiped the ice cream off of his face, t-shirt, pants and out of his hair. He was doing his best to clean up the seats and car too. As she handed the cone back to him he said, “Sorry Daddy.” I asked him why he was sorry to which he replied, “Because the ice cream is all over your seats and car.” I said, “Don’t worry about it. You didn’t do it on purpose and it will all clean up.” He traffic had slowed and we were at the point in the journey home that there were plenty of stop lights. We all laughed about what had just happened as Ben was finally able to recount to us what he had seen as the ice cream started to blow into James’s face.

   I dropped Stacey and James off at the house and gathered the necessary supplies for Ben’s first night at the hospital. He was going in to receive fluids and prepare for the receiving his 3rdround of extremely high dose Ifosfamide chemotherapy. The previous 2 times have worked to shrink the tumors in his lungs. He had a bad reaction the first time. During the first time at one point he became very angry and was crying inconsolably. One of the nurses told me it was the only time she had seen Stacey cry when Ben was in the hospital. The nurses were a little upset as well. Their kind, gentle, always happy Ben was briefly not himself. The effects only lasted for the day because he was fine when I returned that evening. He had made it through that day and was improving steadily thereafter and that is why we went to San Diego instead of canceling his wish. During the 2nd round there were a couple of days when he was a little extra happy and a little extra weepy, but, nothing at all like the first time. We think he will be fine during this time as well.

  On the way to the hospital Ben was a little melancholy. I asked him what was wrong. He said that he wasn’t happy about missing school. He missed his friends and not being there made him more of an outsider. I asked him if any of his friends had ever been unkind, made fun of him or treated him differently. He told me that the only one who had was James and that was only once. I asked him about the kids playing with him and he said that sometimes the boys wouldn’t let him play football with them. He didn’t really want to play because it was a little too rough. Apparently when the teachers aren’t looking the boys sometimes tackle each other. He told me the one boy who always seemed to try extra hard to play with him was Noah. I replied, “Noah is a really good friend then isn’t he.” He agreed and said, “So is Zachary.” I asked him if there were others and he started rattling off names that seemed to include all of the classmates he had ever had – “Gabe, Brandon, Gabby, Zia…”. I pointed out to him that it sounded like he had a great deal of nice friends. We rode further and all of a sudden he said something that caused me to do a double take. “I wish there was someone else at school who had cancer.” I asked him what he meant by that and he explained, “It would be nice to have someone that I have more in common with at school. Nobody at school understands. I’m different. I’m bald. I want to be like everyone else.” Wow, in that one sentence there are so many issues.

   In that instant I am realizing that my little Benjamin is growing up. I remember when Dr Pearce told us Ben was at a perfect age to have cancer (when he was 6) because he was old enough to participate, but, young enough to not be conscientious. He is 8 now. He has grown 6 inches since this began. He has gone through 1stand 2ndgrade and is starting 3rd. He has lived one quarter of his life with the specter of osteosarcoma surrounding him. In the blink of an eye, as I am driving all of this passes through my mind. It’s a wonder I stayed on the road. I started to talk with him about all of the things he has in common with his friends. It was very easy for him to find things he had in common with others. He found ways that he fit in. He talked about the people who understand and try to understand his experience. We talked about Noogieland and Double H and people outside of school. He mentioned the survivors he knew – Kirk MacDonald from the River Rats, Brendan from the Siena Relay for Life  and Joe from Double H. He also brought up Kylea and Sammie as two of the kids that he knows who have faced cancer. He seemed to be feeling better about  himself and his situation as we approached the hospital. I tried to validate his feelings and we also talked about how many of his friends had expressed to him ways that they feel different from other kids.

8/29/2008

   Our day started like most other days. Everyone got dressed and I made breakfast for the boys. It started to differ when we all loaded into the car and headed to Noah's house to drop of James. Noah is one of the boys really good friends. James stayed there will Stacey, Ben and I headed to the hospital for Ben's blood work, CT and bone scans. His bloodwork was fine, although we really didn't discuss it with Dr Pearce. If there was an issue we would have talked about it. Ben had to get the contrast for the bone scan injected at 10:30 for the bone scan that was scheduled at 3 pm. His CT scan was at 1:20. Ben asked the guy who was going to inject him if he was the best. He didn't like the hesitation in the man's answer so he started to cry. Through his tears he said, "I want the best. I don't want what happened in San Diego to happen again." AT that the gentleman left. I think Ben unnerved him. He came back a minute or so later with a gentleman who did a masterful job at finding Ben's vein and injecting the contrast. No more tears and in fact there were a few laughs.

  The scans themselves were uneventful. In between we went out for lunch and then after they were all done we went to the clinic to see Dr Pearce. We didn't have time for the very final report, but, the preliminary was that the 2nd round of Ifosfomide worked as we had hoped. The tumors in his lungs have indeed shrunken further. When Ben heard the news a big smile appeared on his face as he sat up straight and his eyes widened. He looked at Dr Pearce and I and said with pride and joy in his voice, "Well, that's good news." Dr Pearce believed that they were now in the operable range. We talked for a bit and then I asked the question on everyone's mind. "So, what about the next steps?" Dr Pearce responded that we could either operate right away or do another round of Ifosfomide and then operate. Stacey and I said almost in unison that we thought a third round made sense. Dr Pearce was happy that we agreed with her even before she actually proposed it to us. I think we all just new the answer in everyone's minds. So Ben will be going to school on Thursday and then Thursday night he will be admitted to the hospital to start the chemotherapy on Friday. He will receive it for 6 days, finishing on Wednesday. He will then be released from the hospital we will give him a drug that boosts his counts, give him a blood transfusion if it is necessary on 9/12 and go see the Red Sox and meet David Ortiz on 9/13. Dr Pearce said, "You can always drive him back from Boston if you have to. No Medevac planes." I replied, "Heck, we'd probably have ambulance drivers, EMTs, doctors and nurses ready to drive him to and from the park if we had to."

   So the news is great. At this point we couldn't realistically imagine much better. As we sat in the car and I pulled out of the parking space at the hospital Stacey started to cry. Ben told her to stop crying. She said, "I can't Ben these are tears of joy. Sometimes mommies cry because they are happy." I added smartly, "and sometimes they just cry." Ben seemed to understand and the mood in the car on the trip to get James and come home was one of joy and jocularity. Thank you all for being there for us throughout this journey.

8/25/2008

   Friday we decided on a spurr of the moment to head to Aunt Carol's cottage on the north shore of Lake Carmi in Northern Vermont. If you look on Google maps you will see that it is 1.8 miles from the Canadian border. You can't go much further north and still be in the US without going to Maine or Alaska. Unfortunately, I had no internet access so no updates. We had a great time. They boys were a great deal of fun and they really love the area up there. Although, they were not thrilled with the strong smell of cow manure that seemed to permiate the air. It seems that the farmers all decided to spread liquid, organic fertilizer on all ot their fields in our honor. It didn't help when I proclaimed to the boys, "That's how you know when you leave NY and get into Vermont." When we returned to NY the first thing they wanted to do was roll down all of the windows. I kept telling them their "city slickers were showing." Ben and I went out onto the lake in a row boat on Saturday evening. The sun was getting close to setting and the sky was turning pretty colors. He looked at me as I rowed and said, "Isn't this wonderful. Just you and I out here in the middle of the lake alone. Just the two of us with a beautifual lake and a beautiful sky. It's perfect. This is the best time ever and I will always remember it." I just agreed with him and we sat out there for a few minutes and just quietly enjoyed each others company. We rowed back together. I "helped" him row since I rowed us out. When we arrived at the dock Stacey came out to help us get the boat in. He proclaimed to her what a wonderful and special time the last 30 minutes ot so had been for both of us. She helped him out of the boat and he ran into the cottage to tell James all about it. She looked at me and saw that I was all choked up and tearing a little. She asked, "Are you all right?" All I could say was, "Yes." She took the oars and I climbed onto the dock as she helped steady the boat. I pulled the row boat up onto the dock and told her it was everything he had said and more. It was literally a few minutes that last a lifetime, if not eternity. The next time I am asked to quiet myself and recall one of the happiest most peaceful moments in my life it will be the middle of Lake Carmi in an aluminum rowboat bobbing up and down with the sun close to the trees on the horizon as a little bald boy smiles at me and says, "Isn't this wonderful?"

   We aren't going to have much news about Ben and osteosarcoma this week until Friday. On Friday he will be going to Albany Med for scans. He will be getting blood work, a CT scan, x-rays and a full body bone scan. Our next steps will all be decided after we have the results. We will talk a little with the Dr Pearce on Friday and the real planning will take place after Labor Day. In the mean time we will be having as much family fun as we can squeeze in around work and other necessities.

  One last thing tonight. I know many of you will be travelling this week and will most likely be eating out at a restautrant at least once over the weekend. Between Labor day weekend and the end of September I would like each of you to go out to eat at a Carrabba's Italian Restaurant. They are a national chain that tries to really support their local communities unlike any national restaurant I have ever seen. When you go into the restaurant please ask to speak to the manager on duty either before or after your meal. When you meet the manager please thank them and tell them that the reason you came to Carrabba's to eat that night was "because of the support that the Carrabba's in Latham NY has given to Ben Stowell a young boy with osteosarcoma." If you live in Latham feel free to do the same thing. You may even catch our family eating there. I asked Tad, one of the managers, at the Latham Carrabba's if I could do this and he thought it was a wonderful idea. If he actually hears back from another restaurant he will let us know. It is an interesting experiment. Thank you for helping us thank Carrabba's for the huge amount of support they have given to Ben and our family.

8/22/2008

  Ben has been to the hospital twice this week for blood counts and both times his counts have been really good. His platelet count was low, but, not low enough to require him to receive any units of platelets. We have had a simple week that has included relaxing at home, playing games, swimming and a few other low key around the house activities. the trips to the clinic at the hospital always end up chewing up a good part of the day even without transfusions. Ben has enjoyed a very uneventful week with his brother. They have both been indulged a little bit with a couple of trips to Target and Toys R US to use gift cards and spend some of their own money. I think they both ended up with new Nintendo DS games. We have ha a number of visitors pop in to say hi and enjoyed the company of our neighbor Aiva. I am not sure who has more fun with her, Stacey or the boys. I wish I had a story to write about some amazing thing the boys said or did this week. On the other hand it is nice to not have much to write about the goings on within the Stowell household.

   We do have something absolutely wonderful to tell you though. I haven't said anything because I am still in disbelief and part of me is afraid to put it in writing for fear the opportunity might disappear. It appears that for several months now a friend has been working with her family members to make one of Ben's dreams come true. We received news that she accomplished her goal and through the help and connections of her family we will be going to a Red Sox game at Fenway on September 13th. I have no idea where the seats are or even which game on that day it will be. I kind of missed some of the details because my legs actually buckled a little bit and I had to sit down.  After mentioning going to the game the news that flabbergasted me is that Ben and James will get to go on the field before the game and meet David Ortiz. Ben absolutely loves David Ortiz. I immediately thought of a conversation that I had with Ms Hock Ben's 2nd grade teacher in the Spring. She took me aside one day when I ws picking up the boys at school. She asked me if Ben was going to see David Ortiz. I said, "I don't think so. I know he would love to meet him, but, not to my knowledge. Why?" She told me that he had spontaneously come up to her and told her in no uncertain terms that he was going to get to meet him. She said his conversation was matter of fact as though it was a done deal. It seems that once again Ben was showing his prophetic wisdom. When I asked him about it at the time he simply told me, "I know I will get to meet him someday. He is a great man." I am looking forward to seeing David Ortiz meet Ben and James. I will tell you more as the details unfold and you can bet there will be pictures and video galore. Ben is trying to decide what items he is going to ask David to sign for him. One of the things he has told me he wants him to sign is the top of his bald head.  

8/15/2008

  Ben is at the hospital right now receiving 2 units of red blood. We only expected him to be receiving 1 unit so we were a little surprised. Stacey took Ben down to the hospital early and dropped James off at a friends house on the way. Ben had a finger stick and they checked his counts. Ben's port-a-cath was accessed by the nurses at the clinic. They were in the clinic for a while. It was really busy. It is amazing how many kids they are serving. We have come to know several families during these 2 years. That's right we are approaching 2 years. I don't think Labor Day weekend will ever be the same for me now. Ben should be done receiving the blood around 5 pm. The boys and one of their friends are planning on going to the movies tonight. They want to see the "Clone Wars."

   Ben is really doing well this time around. We took them clothes shopping last night for their back to school clothes. We really needed to because they have both grown so much over the summer. Stacey went through all of their clothes a couple of weeks ago and we had a surplus of clothes that no longer fit them. It was nice to be out as a family doing normal family stuff. We were working our way through the racks when I overheard 3 women talking about an adult being diagnosed with an advanced stage cancer. Their conversation was very frank as the discussed his prognosis. I wasn't totally paying attention because I was looking at raincoats for the boys. Besides I don't need to hear that stuff. I was kind of looking their way when Ben came bursting around the corner saying loudly, "I want something really funky, something that is bright and fun." Two of the women were looking our way and they had a look on their faces that was very interesting. Their conversation stopped immediately and the 3rd woman turned to see why they were reacting. Ben was oblivious and acting up with James playfully like boys will do when they have had enough clothes shopping. I could tell the women's world was rocked. I am not sure what they talked about next because we moved on. I can tell you that their looks were a combination of tenderness, concern and surprise. At least one of them was definitely a mom. Here they were talking about someone that was slightly removed from them who had cancer and then a little bald boy slams it in their faces like a pie with laughter and a smile.

8/14/2008

    We have had a slow week. It has been nice to not have anything really newsworthy until yesterday. I meant to post the results of our visit to the outpatient pediatric oncology clinic, but, when I arrived home from work I laid down and didn't get up until this morning. I didn't even bump my head. I may have been snoring. I received a phone call today from my sister. She said, "What's this with no updates!? You're killing me here." I am sure she is not the only one feeling that way.

  Ben's hemoglobin is dropping so he will be receiving a pint of red cells tomorrow. It was not unexpected. The chemotherapy has besically wiped out the ability for Ben's bone marrow to produce blood cells. The chemotherapy targets rapidly reproducing cells. It targets the cancer cells, but, it also affects other cells as well. That's why his hair has fallen out. He is still feeling pretty good. We have noticed some periods of euphoria and sadness. They come and go and are not to extreme. He is funny when the euphoria kicks in. He laughs at the drop of a hat, literally. Not as much fun when the sadness happens. He cried yesterday over a Nintendo DS that he threw up on Monday. It broke, but, we replaced it on Tuesday. He was fine with it and even very happy because the new one is slightly improved (I guess). Wednesday we found him in his room with the old Nintendo DS crying over it like it was hurt bird that he shot with a pellet gun. He was telling us that he knew it was just a thing, but, he couldn't help himself. It was just so sad that it didn't work any more and that he was the cause of it not working. After a few minutes the mood passed and he was back to normal. We talked with Dr Pearce and she was not at all surprised. In fact she brought it up. She asked us if we were seeing any psychological side effects. I guess we are getting off lightly on this one. The episodes are less frequent and less intense.

  I have been asked a couple of times about the Carrabba's fund raiser. I think it was a big success. Thank you everyone. Seeing the people who turned out and hearing about everyone who was there during the time I had to leave. August is a tough time because so many people are on vacation or just travelling on the weekends. We received a check today from the Sagnelli's from the Vally Cats baseball game fundraiser - $780. Thank you Sammie and Angie you are both amazing. Ben absolutely loves the fact that he was able to throw out the first pitch.

8/10/2008

    Ben is home now. We arrived home late this afternoon. He completed the ifosfomide around 10:30 this morning. His hemoglobin (red blood) counts had dropped so he ended up recieving a blood transfusion. It takes about 4 hours for the actual transfusion. We had to wait for a while before the blood was typed and tested to make sure it was correct for him. We were packed and heading to the car around 5 pm. It is wonderful to be home with everyone within these walls. I am looking forward to heading to bed in a few minutes. The boys are already sleeping. Ben has been nauseous since since around 8 pm. We gave him some medicine and he is resting nicely now. He got sick a couple of times.

  Earlier today Ben and I had an interesting conversation. We were talking about one of his counselors at Double H - Joe. Ben told me that Joe was his favorite. I asked him why and he said, "Because he gave me the courage to climb the cargo net in the ropes course when you weren't there." As he said that I recalled what one of the other counselors had told me about Ben and the ropes course. They werew trying to get him to go up a path in the ropes course called Tippy-Canoe. She said that Ben refused and said he couldn't do it because his "Daddy wasn't there to give him the courage he needed." From talking to Ben I found out that Joe stepped up to the plate and encouraged Ben to try the alternate path of the cargo net. Ben also told me that he didn't realize during the week that Joe was a cancer survivor. He found out when I read the posts in the guestbook from Joe to him. Ben and I talked about cancer survivors. Ben said, "I have a few people I know who are cancer survivors - Joe, my guitar teacher and the player from the RPI and the River Rats who is my friend and  Brendan from Siena and San Diego. Isn't it neat." I said yes and asked him what it meant to him to have these people and other survivors in his life. He replied, "It is important and wonderful because they are my future. I am going to be a survivor too."

  In that light I would like to share a video that Ben and I created in the hospital. It is a really a trailer for a larger production he wants to create. I am still working on the details with im and will update you if it develops.

Hospital Clone

8/8/2008

   Today is a special day. It will be 1000 years before we have another 8/8/08. Come up with 8 things to do that are either our of the ordinary for you, selfless or just plain fun. If you have an idea or do something neat make sure you tell us about it. It's an excuse to celebrate life.

   Ben is doing really well. The last couple of days he has been a little extra emotional. He went through periods of being weepy, he even cried a litlle because of a TV commercial. I took him outside yesterday for about 10 minutes of air. As we walked back and forth under a brick portico type structure by the D building doors he started talking about school in September. He asked me if I thought his hair would grow back by then. I told him I didn't know and asked him why he was concerned about it. He said he wanted to wear a wig or hat when he went back to school if he was still bald. I asked him if anyone made fun of him last year at school or if someone had said something. He told me the only person that did was James - his brother. I responded that James was just trying to be funny and was acting like a brother. We had talked with James at the time and thought it was behind us. He was quiet for few seconds and then dropped a bombshell, "I just want to be normal again, like James and the other kids." I thought, "Where is Mrs Satterlee when I need her? What would she or that Randy guy say?" I reiterated his answer to my previous questions about the way people treated him at school. I said, "Your friends love you for who you are as a person not whether or not you have hair. I understand how standing out can sometimes make you feel uncomfortable or out of place. When you lost your hair last year did Gabe or Cameron or Zia treat you any differently?" He replied, "No." I then said, "They are just a couple of your friends think about all the others. If it makes you feel better about yourself and going back to school we will get you a wig. I am sure you will get the same permission to wear a hat in school that you had last year. Ben you are still Ben whether you have hair or not, just as I am your Daddy whether I have hair or not." He smiled up at me and said, "Yeah, I know." We were qhiet for little bit and then the conversation moved on to something else.

   There are several new nurses that we are just meeting for the first time. Ben has been getting his favorite nurse from the Pediatric floor, not the outpatient clinic, during the day.It seems that the nurses have all told stories about my crazy pajamas. A couple of the nurses have even requested a specific pair. One nurse said to the other one the other night, "I like the ones with the flames all over the bottoms and the flaming Superman logo on the top." I haven't worn those yet this trip. Ben still get's a kick out of it, but, not as much as when he was 6. I guess the surprise value shrinks as you get older. It isn't at the stage yet where the crazy pajamas would embarass him. We received a pajamagram the other day. Bens new pjs had little dogs all over them. The pajamas for me had different colored dog bones all over the pants and the shirt said, "dog's best friend" with a big pawprint in the center of the chest. Ben thought they were cool. I thought they were very comfortable. Thank you for the pajamagram, you put a smile on Ben's face.

   Tomorrow is the big fundraiser at Carrabba's. We are disappointed, but, there is no way that Ben is going to be able to make it. It was herculean effort just to get far enough out the front door to get some fresh air for 10 minutes. He had to be disconnected from the chemo because it can't go off the floor. The doctors had a discussion about whether or not the chemo flow should be stopped. It was decided that 15 minutes would be ok. When we returned to the room - with 7 seconds to spare - they increased the flow for a little bit to get him back on the schedule. We are looking forward to seeing some familiar faces.

   Ben is doing really well and last night the weepy/funny behavior calmed itself and he was not acting strangely this morning when I left. That's strangely for Ben. If you didn't know him or spend a lot of time with him you probably wouldn't notice the behavior. We have learned to watch him like a hawk and Stacey and I compare notes with every shift change. We also make sure to talk with doctors. There are so many reactions the kids can have from the drugs they are given. Speaking of reactions. Today at 2:30 they are doing henna tattoos for the kids. We are not really thrilled with that and Ban may not be participating. I explained to Ben that his Uncle Jay had an allergic reaction. I told him, "After he had it on his hand for while he had an allergic reaction and he ended up in the hospital." To which Ben said, "I'm already in the hospital."

8/5/2008

   I had to double check to make sure I had the right date and day of the week. Thank god for cell phones and computer calendaring programs. I am starting to rely on a little thing called a PocketMod to keep myself on track. It's a low tech way to fit a ton of information in your pocket and it's free - http://www.pocketmod.com

Those that are really close to me will be surprised that I am suggesting anything low tech.

  Ben started receeiving the actual chemotherapy drugs yesterday. We talk about it by using the main drug ifosfomide. It is easier than cataloging all of the drugs he is actually receiving in order to make the treatment tolerable. He also receives a huge amount of fluids during the process so he is peeing a great deal. It makes for interesting overnights. When Stacey showed up this morning she thought he looked a little puffy and his face was a little red. I don't think anyone who didn't spend a great deal of time with Ben would notice. It is not uncommon for a some fuid retention to take place, but, they monitor the outflow and his weight to make sure he is not retaining more than expected. A slight change in color is also not unexpected. Again it is something that is monitored along with his vitals. They are also doing frequent urinalysis tests to make sure the drug is moving through his system and that there aren't any signs of kidney damage. He seems a smidge quieter today although I just received a call from the hospital reminding me to bring him some fried chicken. He drove me nuts last night talking about fried chicken. I couldn't find any place that would deliver it to the hospital and it was too late to call one of you guys just for fried chicken. Igot him to eat fluffernutters and chicken noodle soup ionstead. The really amusing thing about it is that other than chicken nuggets, chicken fingers and chicken tenders he has never eaten fried chicken. Everything is going well.

  I have heard from a few people the announcements for the Carrabba's fundraiser this Saturday (8/9) for Ben have been showing up in unexpected, but, not surprising places. I am sure Kris and Katina have been getting some crazy calls as they have posted their phone numbers on the signs.

8/4/2008

   I think it's official I have finally lost it. I could have sworn that I had made an update or 2. I think I must have done it in my dreams. What a full weekend. I will start with the present and work backward. Ben is in the hospital. He was admitted yesterday and was given fluids overnight and they did a baseline urinalysis. Today he began receiving the ifosfomide. He is feeling really well and seems to be tolerating it wonderfully. He won't eat the food here so we are making campbell's chicken noodle soup, fluffernutters and bringing food in for him. So far he is eating well and everything is working as it should. They brought in a Playstation 2 for him to play with and he is working away on the Fantastic 4 game. He is up for visitors and feeling good. This afternoon he played Clue in the Actvity Room with his mom, Aunt Sandy and Uncle Drew. While they were playing Bugs Bunny, Daffy Duck and Sylvester came to visit. There were a great deal of shenanigans. We took pictures and I will post them to the Picasa album tomorrow after work.

  Yesterday (Sunday) Ben went to church with me, Aunt Sandy and Uncle Drew. Communion was served as part of the service. The Bread and Wine (grape juice) were served to the congregation by the ushers. When it came time drink the cup Ben knocked it back and as he brought the cup down let out a soft, refreshing "Aaaahhh." I'm not going to take the time to explain communion, but, I'd like to think that God considers that an appropriate reaction. May the life that was in him, be in us also.

  On Saturday we finally had the chance to have the boys birthday party with their classmates. When we went through the class lists with the boys James would pick someone, Ben would pick someone else and then they'd both pick somebody. There is a boy in Ben's class who only speaks Spanish fluently. Ben asked to invite him so he was added to the list. A couple of minutes later Ben said that we needed to invite a girl that was in his class because she speaks both english and spanish fluently. He didn't want his friend to feel uncomfortable. She shattered the girl barrier. We had originally intended it to be a "Boys Only" party. Before you get upset at me that wasn't my idea. Once the girl barrier was crossed the list increased. We ended up inviting 38 kids. Only 28 showed up at Chuck E Cheese's for the party, along with 18 or 19 adults. It sounds like a huge party, but, when you consider that it is for 2 independant 8 year old boys and it isn't that big. Everyone seemed to have a great time and it was relatively stress free for Stacey and I. Instead of accepting gifts the boys asked people to bring items that we could bring to the CHildren's Hospital at Albany Medical Center to be used in the Holiday Shop or at the Child Life Specialist's discretion. The Holiday Shop is set up in a conference room in December.  The kids at the clinic get to go through the shop and pickout a present for their family members. The staff even gift wraps it for the kids. The Child Life specialists will often use the items during the year to make a child feel special or help smooth over a rough spot in the treatment. We all know how a surprise gift can brighten a child's day. Or to help a child do something nice for their mom or dad.

  Friday was the return trip from Double H. Ben had an amazing time and I will be adding a page to this site about it. This year he actually took pictures so I will have something to work with. Since I am going to be doing the overnights next week when Ben is back in for his ifosfomide I will have him captive and can interview him about Double H. It will also give me something to do with him in the hospital room. On friday night there was a baseball fundraiser wiht the Valley Cats. They lost, but, that didn't matter. It was a fundraiser for Ben and 2 other great kids who are fighting the evil alien - Sammie and Luke. Sammie has completed her treatments and is doing really well. The fundraiser was originally going to be for her, but, she asked to have it for Ben and Luke too. The best part was that all 3 of them were there and they each had the opportunity to throw out the "first" pitch. Ben threw out the first first pitch of the game. It didn't reach the plate, but, nobody cared - not even him.

  I almost forgot something. On Saturday morning Ben and I got up really early and headed to the WNYT TV Studios - Locally known as Channel 13. Ben was interviewed LIVE on the Weekend Morning Show about the Green Drakkoman. He really enjoyed it. I sat next to him for moral support. I really don't like how I look on TV. Ben was great and surprisingly relaxed. When the producer called me I told her we would do it and asked when it would be taped. She said, "It isn't taped Mr Stowell. Ben will do the interview live." I replied,"Wow, you guys are brave interviewing an 8 year old live." She fired back, "That's why you will be sitting next to him." They showed us around the studio quickly and we were able to stick around and watch how a TV news show is done. I don't think people realize how much really goes into a broadcast. It's amazing there aren't more bloopers. I have a copy of the interview. I have to figure out how to get it on the web site without violating the Digital Millenium Copyright Act.

7/29/2008

  I want to take advantage of this slow news day to thank you all for everything you have done and are doing for Benjamin and our family.  Last night I took James to Noogieland. If it is Tuesday and either of the boys is any where near Latham you know where to find us - at Gilda's Club. Last night James and the other kids went outside and had water battles and played on a Slip 'n Slide. It was a great time and the children were all running around wet and wildly laughing as they tried to give soaking hugs to the program coordinator. James was thrilled because the evening's activities were inspired by a suggestion he had put in the activity suggestion box. I have decided that one of the most perfect jobs in the world has to be an elementary school physical education teacher. I am sure there are many stress inducing duties and a vast amount of paper work. I am also sure that watching children play with complete abandon and absolute fun is magical. Last night I had the chance to experience the magic and realized as I was watching I need to allow more of that magic to happen within my own life. I also need to foster it more and more with Ben and James. I have been a little cranky lately.

  So many of you have done wonderful things for us during this time. I hesitate to try to name folks because I often get the details wrong or miss someone who was an integral part of something wonderful. I can never say enough about the folks at NCYBA especially Jamie who put together fundraisers and have been bombarding our family with support. Youth sports leagues sometimes get a bum wrap for taking their sports too seriously. I can tell you that the individuals and parents at NCYBA take one thing seriously besides baseball. In all things they put the children first. The goal is to foster growth in the children and love of the game of baseball. The goal is to use baseball to teach the players about life. The goal is to let the kids have fun in spite of their parents and adults. I have seen some pretty amazing things at NCYBA and watched children become friends as they playred together and formed a team. I have watched children reach out to each other in ways that were just simple and sweet. These things only happen when parents and adults get out of the way and encourage the inate behaviors of kindness and friendliness that I think all children possess. We all just want to get along in the world.

  I am also thankful for those of you who have come out of the woodwork to support us. We have heard from old friends and family members that we haven't seen in decades not just years. It is so easy to lose touch with others as we grow older, move away, job changes and life changes. It is not that we intentionally stop seeing people. It just happens. he amazing thing for us has been although we haven't seen folks in a very long time our friendships are not forgotten. They are celebrated. It is as though we were never apart. Friends com and go in our lives, but, we have found that friendship really is forever - as is family. We have also found that wherever you go you have friends and family. You just need to see them and recognize them. That was the biggest lesson of the trip to San Diego. We found family that was there to remind us that blood is blood and family helps family no matter what - Cousin Betty. We found family members of friends - Loretta's sister - Ellen's brother - John's brother - who were there to represent our friends with whatever we needed, we only had to ask. The new and instantaneous friends we made while there who showed us that kindness and love are always around us if we are open to the possibility - the Kite man, the kid's in the pool, the nurses at the hospital, the San Diego firefighters, Jose (the man responsible for keeping the hotel pool deck spotless), the kids in the pool on any given day and James the volunteer from Make-A-Wish.

   We have had friends call, sometimes at really odd hours of the day and night. Reaching out to say they have been thinking of us and just felt the need to call. These calls have happened at the perfect times. Conversations steering towards topics that seemingly have little to do with our situation, but, end up giving us inspiration, strength or courage that is necessary or just a few moments of laughter and joy. Receiving a quilt handmade with love and prayer that Ben can wrap himself in to feel comfort and the warmth of the love and prayers of others. Opening a package addressed to the boys and finding hand made pajamas, baseball memorabilia or t-shirts from a championship hockey team. All of these things are tokens of love and end up meaning so much to us and to Ben in particular. Thank you Elaine and Aunt Carol. Thank you Olsens. Thank you Cousin Susan. Thank you everybody for all that you have done and are doing for us. When you ask me how we are able to get through this nightmare with the relatively positive and graceful manner the only answer I have is to tell you to look in the mirror. All of you continue to allow us to lean on you for strength, guidance, support, courage and even things we didn't know we needed.

  In closing of this very long post I will mention Double H. We have no idea what kind of time Ben is having. We imagine it to be the "Best Day Ever" at Double H. We are completely out of touch with him and in fact the only reason we would hear anything this week would be if something bad was happening. So no news from Double H is fantastic news.

   Last year and every year at the end of camp all of the children and counselors gather at the waterfront after dark and sing songs. It is really late and dark as they light "wish boats" on fire and push them out into the water. As the wish boats burn carrying their wishes to the heavens they sing a song with one voice that will forever bring tears to my eyes. Please read the lyrics below with the image of a dark adirondack night. Watching small floating bon fires sowly move away from shore towards the center of a lake. First you hear one adult voice start the song and then you hear a couple of other join in. As the first line of the song ends the voices of 120 children, all of them facing life threatening illnesses, are added. It is sung solemnly, but, within the tone you hear joy not sadness. You realize they are celebrating friendship and singing it to each other - meaning every word. You cannot see the individuals singing because it is too dark and they are too far away. As the boats burn they sink into the water and you see them disappear from view. You know in your heart that as the children and counselors are singing they are hugging each other and swaying. Perhaps some of them are crying, most of them are smiling. You can hear it in their voices. You look around at the parents and family members standing around you on the road above the waterfront and realize