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April 30, 2007

By Margot | April 30, 2007

The official word from Children’s San Diego on the MIBG is that Sam’s disease is stable – though the doctors say that the uptake is not visible on the computer screen at all.
 
Sam is at school today. He missed three days last week but was cheerful this morning on his way. He was a little tired on Saturday but rallied yesterday for going tide-pooling in the morning and soccer in the afternoon (don’t ask what the score was- it was ugly). Last night I was reading the boys a book – Scooby Doo and the Marsh Montser- and there was a Mr. Samuels in it. Sam said, “Hey Mom, Samuels! Get it? From now on when you read his name can you say Mr. Sam?” It was funny. I read the rest of the book reading “Mr. Sam” and Sam was satisfied. People who don’t know him at the hospital address him as “Samuel” and he hates it so he must have assumed Mr. Samuels would have hated it too. He’s been making Charlie laugh a lot these days. He can really get him going and he loves it. I’m sorry to say that he and Andy can also get Charlie crying too, they treat him like their favorite toy which is mostly good but sometimes requires intervention. I have to run out of the kitchen when I hear, “Hey Andrew, watch this.” and then I hear Charlie cry. They aren’t really hurting him, just pestering him. He is a cutie. So sweet. He’s cruising around the furniture these days and lets go every once in a while and balances for a few seconds before falling on his behind. He’s a lighting fast crawler and though we’ve put a gate at the top of the stairs, we’ve yet to get one for the bottom of the stairs. He can get to the top in record time and it’s his favorite game to see how many stairs he can climb before someone comes and collects him. Andy is doing well, we’re starting to work with him on writing his letters and numbers. I bought a couple of preschool workbooks and it’s been great for Sam. When Sam does his homework Andrew does his worksheets. Sam is much more chipper about doing his homework now that someone else is suffering with him. I watched Andrew from afar after soccer yesterday. He was shaking the other team’s hands telling them “good game” as we’ve taught him to do and whenever anyone shook his hand he shook his whole arm and head making them laugh. After a couple of handshakes the whole other team was lining up to shake hands with Andrew. It was a quintissential Andrew moment.
 
Tomorrow is the kickoff at Sam’s school for Coins for a Cure and the Swami’s bike team is coming to school on their bikes and will introduce Sam as their honorary team captain. Have I mentioned that we love these guys? They are just awesome. I talked to Sam about whether or not he wanted to go up and stand with the bike team. He wasn’t sure. First he said yes. Then he asked if anyone else was going to go up and stand with the team. When I told him no, it would be him because he gets to be the honorary team captian, then he said “no,” thought about it awhile and said “maybe” so we left it as a game time decision. I’ll post tomorrow after the assembly and let you know how it goes. He’s really excited they are calling it TeamSam and is starting to understand a little bit about what it’s all about. I know that sounds funny since he is the cancer patient but we’ve always tried to keep the gravity of the situation as our burden to bear and not his. He’s so funny. The other day I made him his favorite peanut butter and chocolate milkshake and he gave some to Charlie before I could stop him and I said, “Charlie’s not supposed to have peanut butter until he’s one in case he’s allergic but I guess he’s not allergic.” Sam said very happily, “Hey, none of us are allergic to peanut butter. Isn’t that great, Mom?” It made me laugh. I was thinking, yeah forget about the fact the you have cancer and rejoice in the fact that you and your brothers are not allergic to peanuts. There’s a lesson in there for me and I’d best take it before I become some bitter woman who sucks the life out of everyone she meets.
 
We start chemo again today after school and will probably do three days of IV topo and two weeks of oral cytox. It’s kind of funny to write chemo in nicknames, it’s like I’m talking about old friends. I have a love/hate relationship with these friends. They are keeping my son alive but I would like to hang out with a better, less toxic crowd. We are not going to do a bone marrow biopsy here because when we go to Houston for the vaccine trial, we will need to do one there along with a CT another MRI, MIBG and probably a bone scan so no need to put Sam through it twice. In San Diego the parents stay outside of the procedure room during the bone marrow biopsy but at The City of Hope, Dr. Bolotin would do it while I was in the room. In all of Sam’s treatment and all of the things I’ve seen him go through, watching the bone marrow biopsy was the only thing that flat out made me faint. Sam is put sleep, turned on his stomach and the doctor forces this gigantic needle into his hip bones in order to get a sample of the marrow. It’s really not a fun thing to watch- can’t imgaine it’s much fun to undergo even if you are asleep. Now that I’ve perked up your day with that lovely visual, I’m going to perk it up even more by posting a link to this year’s Pulitzer Prize winning photos. They are of a young boy in Sacramento during his battle with Neuroblastoma and they say a thousand words on how horrible this disease really is and why every parent has such a sense of urgency even when things are going well. I must warn you that these are tough to look at and I completely understand if you don’t want to do it to yourself. They rendered me utterly useless the day that I looked at them and I can’t bring myself to go back and look at them even when posting the link: http://www.pulitzer.org/year/2007/feature-photography/works/index.html
 
Margot

Topics: Progress Reports | Comments Off on April 30, 2007

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