Ampho-terrible

It looks like we have a few more rough days ahead of us.

First, the bright side of things. Henry's pain is much better controlled. We've been adjusting his morphine drip a couple of times every day. Now, when he is awake, he says that he's not in any pain, and he seems to be sleeping more comfortably.

Secondly, his total white count was up to 60 today. For the last few days it's been undetectable (reported as <50), so this is a step in the right direction. This is much more likely to be leftover white cells that left the marrow, rather than the new ones from the transplant, as it's still too early to expect them to show up. But we'll take them from anywhere! Every cell helps...

On the flip side, Henry is running fevers constantly, generally 102-103 degrees. This concerns his doctors who plan to adjust his antibiotic regimen. He's already taking zosyn, amikacin, and fluconazole. The plan today is to increase the dosage of the amikacin, and add flagyl and amphotericin. Amphotericin is an anti-fungal medicine, of which I remember nothing from medical school except it's nickname, ampho-terrible, named due to it's uncomfortable side effects. There is now a coated form of the medicine that is supposed to have toned down those effects, so we will hope that he tolerates it well.

He had a CT scan of his sinuses and chest this morning, followed by an ultrasound of his pelvis and abdomen. They doctors are looking for a source of the fever, tho most often one is not found. We haven't yet heard about the results of the studies.

Henry is also struggling with multiple rashes. He has an itchy rash in his groin, we believe from one of the chemotherapies since that one has happened once before. He has a separate rash all over his chest, where we weren't able to clean as well (due to his Hickman catheter) when he was getting his four-times-a-day baths for the thiotepa. Tho he does not seem bothered by the rash, it's fairly impressive looking, and I can't imagine what would have happened to his skin without all that bathing.

In addition, he's got a bit of thrush in his mouth now. He's not complaining about that currently, but does complain of throat pain especially when he coughs up some mucous. The mucous is less bloody today than yesterday, but I'm not sure why.

I have mixed feelings about listing all of this information. I know that it is disturbing, and it is not my intent to keep you all up at night. But I feel a profound need to give voice to Henry's struggle, and Bryan and I are the filters through which that happens. Since Henry can't speak for himself, we need to help him tell his story. It's a story of courage, resilience, love, and strength, but it's unfortunately also a story of pain, fear, and loss. It breaks my heart to see him go through this.