We did get the results of the donor matching tests for Kendall’s siblings. We were told that there is a 1:4 chance that a full-blood sibling will be a match. Kendall had five siblings who were tested. None of them were complete matches, but three of his siblings were half matches (5/10 markers matching). They then went to the Universal Donor Bank, where they said Kendall had an 80% chance of finding a full match. Unfortunately there were no matches there either, just a few half matches. So we are now going to move forward with the transplant using a sibling who is a half match. Using a half match does increase the risk level (and chances his body will reject the new bone marrow), but it is still possible to have a successful transplant.
Another PET scan last week showed that the mass in Kendall’s lung is smaller, and all other spots and areas they were watching showed some improvement. Good news! They want to look more closely at all of his spine, but they need to use a special machine to do that imaging because of all the hardware in his back. Kendall won’t be able to get those done until January, but with the way things constantly change he’s not even sure if by that time they will still need to do them at all.
Kendall has been taking a different oral chemotherapy drug for nearly two weeks now (and they just more than tripled his dose of that drug), but we’re still waiting for him to officially start this next course of chemotherapy in the hospital. Kendall is still very weak (much more so than is typical from chemo) and has some neurological symptoms the doctors are concerned about, so on Monday he’ll be doing some testing (an EMG test, a cervical MRI, multiple labs, etc.) and we’ll meet with a neurologist. The running theory is that the methotrexate drug he responded so badly to last round (also the one he has that chromosome mutation that makes his body unable to flush that drug out of his system) may have caused some lasting nerve toxicity. The good news is that some types of nerve toxicity can be treated by high doses of different vitamins, so while we wait for official testing and results Kendall is doing daily B-12 shots and oral doses of folic acid.
I feel like I’ve handled most of the care and medical procedures to this point pretty well, and Kendall has been amazing with enduring everything like a champ, but I have discovered that I DO NOT LIKE GIVING SHOTS. At all. I’m so worried that I’ll hurt him, or mess something up in some way. But like everything else with this experience, we suck it up and do what we have to do. *shudder*
So that’s our update. We’re hoping to have some more answers after Monday, which will be a very long day (leaving at 4:45 in the morning, and not getting home until after dinner). Also hoping that the snow isn’t too bad that day. In the meantime, we’re taking advantage of a quiet day at home today with no hospital visits, school work, speech clients, appointments, etc. We split the family into teams and we’re in the process of holding a Chopped-style cooking contest today (pro parenting tip: I’ve discovered this is a great way to use up food items that wouldn’t otherwise get eaten). Winning team’s captain gets to keep the coveted bedazzled paper plate, inspired by the plate award from The Great British Baking Show (although ours is much more sparkly). Wish us luck!
