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October 11, 2006
By Margot | October 11, 2006
We were sprung from the hospital yesterday afternoon after a very long four and a half days. Sammy’s white count was 368 -still low but on the way up and it usually goes up pretty fast once it starts on the upward trend so Dr. Willert let us out. I was feeling sorry for myself after racing back to the hospital Friday morning and I ran into Manny, who works the front desk at the clinic and is sometimes at the nurse’s station. He’s also the resident head shaver for the dad and kids when they start to lose their hair. He asked how we were doing and I said, “Ugh, we’re stuck in-patient.” He said, “Come On! Make the best of it! Come on!” Manny lost his daughter to cancer years ago and he is so great with the kids. I’ll come in for appointments and he’ll have all his fingernails painted different colors and I’ll say, “Nice fingernails, Manny,” and he’ll say, “Do you like them? A little girl in-patient did them for me.”
So, we made the best of it.
The kids did well. We brought Andy and Charlie up all day on Saturday and Sunday. Mimi came and visited all Saturday morning and Joe came in the afternoon. Sam was thrilled to have visitors. Little Joe was funny, he thought the hospital was the coolest place. The boys played air hockey in the playroom and had rides on the bed. I’d dropped Andrew off to have a play date with Jakey and picked Little Joe up to bring him to the hospital. On the way, I asked, “So what did Sammy miss in school on Friday?” Joe answered, “He missed A LOT.” I’m thinking, “Oh boy, a lot of make-up work.” Then he said, “He missed recess AND lunch recess!” It cracked me up. Andy and Sammy hung out together all day Sunday. We got Sammy unhooked in between meds and took the boys out in the garden to play chase. They ran around for a solid two hours and whenever Neil or I took a break Sam would say, “Come on, you’re wasting my time unhooked!” Yesterday morning he went to the hospital school room and did some math with the teacher there and played math games on the computer. Neil and I were pretty beat after the weekend and very happy to be home.
Chemo sucks…
Sam got a blood transfusion on Saturday. He needed platelets and red blood. Dr. Willert’s not sure his counts will have recovered enough to start chemo next week. We’ll do a blood check on Monday to see where we are. Platelets have to be at least 75 I think. He had some mouth sores over the weekend that seem to have gone away and had a really red eye that the doctors thought was cellulits so he’s on another antibiotic for that. It was gone this morning though. I think he’s getting the same itchy rash he always gets after chemo in the nether regions and he’s starting to lose his hair. It’s all over his collar and on his shirt sleeves and tonight he had trouble getting to sleep because it got in his mouth and eyes. Manny says it’s best to just shave it off at this point so that it’s not so itchy but when this happened the last time and we proposed it to Sam he said no way. I know that if I pull on his hair it tufts will come out but it’s not noticeable yet. Friday is picture day at school. Neil is going to shave his head again. I’m going tomorrow to get some posters of Michael Jordan, Lance Armstrong, Andre Agassi and other cool bald sports guys.
Sam went to school today and had a great day. I went to pick him up and they had just gotten out of music. He said “Mom, we didn’t just sing in music, I got to actually play instruments.” His class is going on a field trip to a Pumpkin Patch and he really wants to go. He told me he’s trying really hard not to get his card moved so he can go. He’s so cute. I really hope he can go and we’re not in the hospital – hard to plan. He had radiation again after school. We are on day six and he’s getting really sick of it but it’s going very smoothly now and isn’t too long.
I spent the day with Andy and Charlie today. I took Andy to a music class at Nightingale Music, which he loved, and then we came home and played lightsabers and hide and seek and then I took him to school in the afternoon. He got his flu shot this morning and every time he remembered about it he would start to fake sniffle and tell people sadly, “I got a pooookkkkeeyy toodaay.” When his teacher asked to see it he showed her the wrong arm. He was at meltdown point after radiation but Maureen came over tonight and he got his second wind. Charlie is officially two months today (It’s 1:30am and the kids are fnally having a good night sleeping and ironically, I can’t sleep). Charlie is getting bigger and bigger. He had his doctor check up last week and he is in the 97th percentile of height. He’s smiling more and more and is starting to like riding around in the baby bjorn facing out. His little head and neck are getting very strong.. He’s still waking up at 4am wide awake. Speaking of which, I’d better get some sleep.
But, I need to tell about the best and most important news of all today. Little Penelope London, our friend in New York, had normal LDH levels today. She was sent home to die with dignity over six weeks ago. Her LDH was at 3500, five times the normal range. She started taking Nifurtimox and did a round of Topless Cyclone and she is doing very well and her blood levels are normal. This is unheard of. We are so happy for the Londons. Go Penelope Go!
Nifurtimox is a drug used to treat Chagas disease. Chagas is a water born disease that is relatively common is South America. It’s similar to giardia here in the U.S. but it’s worse. There was a five year old little girl who had progressive disease on upfront therapy and had disease throughout her body. She was transfusion dependent and had something like eighty transfusions. She contracted Chagas disease from a young man who had just come back from South America. We don’t screen for Chagas disease in the U.S. because it is extremely uncommon. The little girl went into complete remission. This was after she had not responded to any of the chemos given in upfront therapy. As Neil says, it’s like stopping a freight loaded, ruanway, downhill train. Neil read the abstract that was written by Dr. Scholler for the ANR meeting and called her up. She has been doing lab data with Nifurtimox ever since treating this little girl and had great lab data. Neil and John London had a conference call with Dr. Scholler and were convinced. John went through amazing red tape with the CDC and FDA and got the drug approved and shipped. It is made by Bayer and they are excited about the possibilities. Penelope is the second child to get Nifurtimox for Neuroblastoma and Sam is the third.
Hope is a beautiful thing.
Margot
Topics: Progress Reports | Comments Off on October 11, 2006
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