Tyler’s course so far since he arrived back at the hospital has been a little touch and go, but mostly he’s felt pretty well in comparison with the last few weeks. The high dose Ara-C is causing headaches, nausea and vomiting, but it seems mostly to be contained to the hours right after he takes it, leaving a good chunk of time in the middle where he feels fairly good. Eating is still a problem. He takes an appetite stimulant which helps him eat a little bit, but he’s still losing weight.
Tomorrow morning will be Tyler’s last dose of IV chemo for this course, then he’ll take a quick trip to the OR to have intrathecal chemo put into his spinal fluid. The next day he’ll start the oral chemo (sorafenib) at half dose. His skin still hasn’t completely cleared from the terrible rash he got with his first round of sorafenib, so we’re really hoping that he can tolerate the half dose.
That’s about it…just wanted to provide a quick update. Tyler’s spirits have been excellent these past fews days – it’s so great to have our son “back” again after so many weeks of not feeling well. Even though Tyler’s been getting chemo for the past four days, his counts continue to recover and rise in this early stage, which is why he’s feeling more and more like himself. About a week after finishing the IV chemo, his counts should be back down to zero, which is when infection, mucositis, rashes, etc, can get really bad. We don’t know what’s coming, be we’re defintely grateful for these few good days we’re enjoying!