A little ray of sunshine

It's a beautiful Saturday morning! Nick's white counts are finally on the rise and his fever is declining proportionately. He is still on the feeding tube, pain meds, antibiotics and hydrating fluids. He is slowly recovering his strength, the swelling in his right eye and cheek are starting to reduce, his skin damaged by the radiation is starting to return to normal, he can speak a bit clearer, he isn't having to use the suction tube for the mucus nearly as much and he, unbelievably, still has a sense of humor. He is able to take a shower entirely free of his constantant companion, Ivy (the pole that carries all of his iv meds). To my proud amazement, he doesn't complain or whine. I do.

Yesterday, he spent considerable time out on the terrace with Savanna, just enjoying the mountains, fresh air and friendship. I think that did more for him than what the doctors have done all week.

Earlier in the week, he met a young man by the name of Mike, age 21. Mike has stage 4 rhabdomyosarcoma in his right sinus cavity and lymph nodes - just like Nick - the only difference is that Nick has alveolar and Mike has embryonic. They have the same oncologist but Nick wasn't interested in meeting Mike until this week. Mike was diagnosed in November, has completed 4 rounds of chemo and 28 radiation treatments. He had surgery last month and is in remission. He has to take another 4 rounds of chemo to make sure the cancer doesn't come back. He is just across the floor from Nick beginning round 5. He came in and reassured Nick that this would be his worst week and promised him it would get better. I mostly asked questions as Nick couldn't talk very well. They have alot in common and it was good they had a chance to visit.

I also found a very helpful online support group specifically comprised of parents of children with rhabdo (and a handful of young adults with rhabdo). You can ask questions, share your fears, vent, anything you want to say and there is someone out there that knows what you are going through. I shared one response with Nick and he went ahead and signed up as well. His first question was how to help with his mouth sores. Within minutes, he received dozens of suggestions; as soon as he can swallow again, we'll start tyring some of the shared ideas.

The doctors anticipate another 2-3 more days in the hospital. They never did confirm the source of his infection and Nick needs to be off antibiotics with no fever for him to go home. Good news is that perhaps he won't have to start chemo on July 2nd as his body just isn't ready yet.

Once again, with gratitude, we thank you all for the prayers.

Mom
Lori