Another month has gone by. No news, is good news, right?
We have now negotiated our first Thanksgiving and Christmas without any hospital visits since Josh’s first diagnosis in November, 2001. It was nice celebrating at home, thank you very much.
So, how’s the kid doing, you ask? Since it’s an even day, we’ll say great. Odd days seem to be causing some problems. He’s been dealing with nausea again and it seems to be on alternate days. Some days he can eat great all day, on others it can be a struggle. He’s been loosing weight again because of it. It’s usually a smell that will trigger it and he doesn’t seem to get much warning, either. The doctors think it could be caused by the Abelcet he’s getting via IV at home three times per week. It could also be a mild form of GVHD. He just has to deal with it and we have to find ways to get him to eat better and keep his weight up.
Other than that, he’s doing great. His blood counts and checkups have been good for his last three clinic visits. He started his series of childhood immunizations last month. He gets to repeat those since his immune system was wiped out with the transplant. He’s taking them a lot better at age 15 than when he was two. It’s hard to believe he’s just two weeks away from 16.
He had another appointment with Endocrinology and they want to run some tests then start him on Human Growth Hormone (HGH). It will be a few months to get the tests and determine what he’ll be taking. They definitely have some benefits and Josh perked right up when the doctor was discussing how they’d help his bone density and muscle tone. They won’t, sadly, help the Avascular Necrosis in his ankle. That’s here to stay. Josh will have an autopen injector for the HGH and will give himself a shot each night before bed. Once started, he’ll have to continue these for life but they will provide some real benefit. The doctors at the BMT clinic were glad about it and said it would not conflict with any treatment or meds he’s on.
The dry eyes he was dealing with in December have cleared up pretty well. They think that’s something that will flare up from time to time from now on but he’s managing it well with the preservative free eye drops and we found some which weren’t as expensive as the first ones we’d picked up.
Josh finished his first semester back at school after missing two years. He’s done a great job academically, which was a major concern for us after all that time off. He manages his time and studies really well and we’re really proud of him. He pulled down mostly As, but he’s going to have to do something about Art. Okay, I can’t draw a straight line, either, but he’s got to – at least for one more semester. We still have to figure out a way for him to get his gym credits as his Orthopedic surgeon requires that he not put any impact on that ankle for at least one more year, i.e., no gym through December, 2006. He also still has that PICC line in his left arm, so he can’t do any upper body stuff.
Oh, well, people have been asking for an update. Be careful what you ask for.