September 13, 2006 at teamsam.com Blog

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September 13, 2006

By Margot | September 13, 2006

We met yesterday with Dr. Mundt at UCSD radiation. He was great and professional and we really felt like he knew what he was doing. They have all new machines which will enable Sam to get the latest and greatest form of radiation. Dr. Mundt is very confident that we can avoid the growth plate (important so that Sam doesn’t have one leg shorter than the other). He also said that the level of radiation for neuroblastoma is well below the toxicity for the growth plate so there is a chance it wouldn’t be affected anyway. Neuroblastoma is a very radio-sensitive tumor so there is good response to radiation at lower levels. The bad news is that it usually pops up somewhere else but hopefully Fenretinide will take care of that happening. UCSD is going to work with us on scheduling and since Sammy doesn’t need sedation we can schedule radiation for after school. It’ll be two weeks plus two days of continuous radiation. Because they need it to be continuous, and we have to be up in LA next week for the MIBG and blood draws for three days, we won’t start until the following week – Monday, the 25th. Next week is the MIBG injection in LA on Tuesday the 19th, the MIBG scan on Wednesday and, as long as we don’t see a run away train on the MIBG, we’ll start the next course of Fenretinide on Thursday with the every two hour blood draw all day Thursday. If we do see new spots on the MIBG, we’ll change course and start something new. We’re talking about what that might be.
I was freaking out yesterday about all of the school Sam is missing. He had an ear infection and a bad cough and missed Monday and Tuesday of this week and is going to miss three days next week up in LA. I realized I just have to let it go. His teacher is great about working with us and said we can just make the work up as we can. I sometimes obsess about the wrong things, making sure every worksheet is done, etc. It’s probably making him hate homework. I also focus on the small quality of life issues and I think it’s probably to avoid having to focus on the big picture of this crappy crappy disease. I just want Sammy to have as much normalcy as possible.Of course normalcy doesn’t really include a shrieking mother practically tying him to the kitchen table to get his homework and make-up work done and saying things like, “No one is going to pay you to play video games! How will you get a job?!” So glad that flew out of my mouth. Now, not only can he worry about what horrible thing is going to happen to him at the hospital that day and the fact that he is sick, but he can also have a little doubt, at the ripe old age of six, about whether or not he’ll ever be gainfully employed. Cancer is not the only thing scarring my poor little boy.
Speaking of normalcy, Jayne at Childrens San Diego rescheduled our appointment that was set for tomorrow in the middle of the school day for today (which is Sammy’s half day so he wouldn’t have to miss any more school). Thank you Jayne!
Last night was back to school night for parents at Andy’s school and tomorrow is open house where he gets to meet his teachers. He starts school on Monday next week. I love his little school. It’s all about letting the kids be kids and exploring projects and art and they are not really into work sheets and drilling the letters into the kids. Since I’m a driller, it’s good for me to take a step back and I’m trying to apply that to Sammy too. Andy is doing fine, still a little sick but funny and happy and growing into such a big boy. Charlie turned one month old and it’s as if his eyes opened up and he doesn’t want to shut them. He was such a sleepy little baby and now he’s decided he needs to see what’s going on in the world. Unfortunately, he doesn’t just decide this during the day. The last couple of nights he’s been up from 2 to 4:30am happy and wide eyed as can be.
Margot