Tyler’s been back in the hospital for ten days now. He completed his three IV chemos on Friday, but the cumulative effect continues to build in his body. With this second course, he is getting closer to receiving the life-time limits of these very damaging drugs.
The past two days he’s been in significant pain from a particularly nasty side effect called mucositis, where the chemotherapy destroys the rapidly growing cells lining the mouth, throat and intestines.
The pain associated with mucositis is excruciating.
Tyler’s bleeding sores in his mouth and throat make it torture to take his oral chemo and antibiotics, to eat and drink, and even to yawn. They assure us his pain level will only increase over the next few days and would like to give Tyler a PCA pump where he can self-administer morphine. He’s been resistant to this because he wants to be alert when his friends visit, but today is willing to give it a try.
The pain team will be visiting with us later today. Tyler continues to vomit and have other symptoms as well, but the pain is the primary concern.
Also with this hospitalization, Tyler absolutely despises his Hickman central line and wishes he could have his PICC line back, but a Hickman is required due to its ability to be placed for long periods of time.
Yesterday, Tyler started his 20-day course of sorafenib. Because sorafenib is still a study drug for pediatric AML, the medical team isn’t sure what side effects to expect for him. While the list reads pretty much like any other chemotherapy, oral chemos typically pack a smaller punch when it come to severity of the effects. Specific to sorafenib, we’ve been told to look out for skin breakdown and muscle weakness.
Because it’s an oral chemo, the hope is that being on sorafenib for 20 days won’t prevent Tyler’s counts from recovering like they did with his last hospitalization. If it doesn’t, we can expect Tyler’s counts to begin recovering in three weeks, which could put us on target for Tyler coming home on Thanksgiving Day!
On the transplant front, we got some initial information about the four potential donors. One is unavailable. Two have agreed to the further testing that’s required to see if they’re good matches. There’s no word on the fourth yet. Assuming the testing doesn’t rule out the two willing donors, we’re looking good so far!
Thanks for your continued prayers! Two special requests right now are that Tyler can get enough relief from pain in order to start eating again and that he won’t vomit around the time he takes his oral chemo, so it has time be absorbed into his body. This morning he threw up less than two hours after taking it, so we’re not sure if it “took” or not. Also, please pray for things to go smoothly with the testing of the transplant donors.