Lots Going On...

At Max's clinic appointment on Monday 1/8 we spoke with his oncologist about school and when we should keep him at home due to low blood counts (ANC). (If Max gets an infection that results in a fever he will end up in the hospital getting IV antibiotics for 10 days. When his ANC drops this is a distinct possibility.) The doctors' feeling was that even when Max's ANC is low it is much more likely that if he were to get an infection it would be caused by a virus already in his body and not by a runny-nosed friend at school. So this great news... Max can go to school much more often than we were expecting. This is such a great relief for us - and for Max even if he doesn't know it - that he will be able to keep up his social activities with his friends. Along with medical health, mental health is so important!

We started Max on an appetite enhancer, Megace. You'll see in the radiation photo below how thin the boy is! He weighs a whole 37lbs. It will take 2-4 weeks before we start to see a change in his appetite. We can't wait.

We're also looking at adding something called a bisphosphonate to his treatment cocktail. It's a bone strengthener used commonly in cancer treatments and osteoporosis. Since the cancer he has right now is in his bone (and he's receiving radiation to his bone) we thought this would be a good addition. Max may need to wait until the Nifurtimox trial is completed before adding this, because there is also a trial on this drug testing the theory that it may make bones stronger which then makes it more difficult for cancer cells to attack said bone (this is my layman's explanation - don't quote me!). Whether that's true or not we do not know, however, couldn't hurt, could it!

Here's yet another photo of Wonderboy (he's smiling in there!). Max just started radiation treatments at the Moores UCSD Cancer Center in La Jolla. He'll be receiving 12 treatments, 12 days in a row(excluding weekends!). The making of this mask was quite possibly one of the most amazing feats Max has pulled off. It starts off as a flat screen. The tech warmed it up in water then stretched it down over Max's face and head and held it there for 15-20 minutes while it cooled and hardened. Max just laid there and did it. No biggy. Of course, I just carried on like this was an everyday event (all the while I thought my eyes might pop out of my head wondering when he was going to reach the end of his rope). Now Max wears his mask everyday for his radiation treatment for about 5 minutes. He lays on the table, puts on the mask and the "guys" get the sharpie marks drawn on his body lined up with the lasers. Then everyone has to leave the room and Max receives the radiation in there all by himself. I even have to wait in the lobby! He comes out all dressed and smiling. Unbelieveable!

Next week he's scheduled for an MRI, bone marrow aspiration, and MIBG scan in addition to radiation. His next chemo is scheduled for 1/22 pending blood counts.


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