Isn’t the sheer quantity of these medications impressive? That picture does not include the medicines that Kendall took with him to the hospital (some of them have needed to be specially mailed to us because they don’t carry them at Huntsman), or the new ones he has been taking at the hospital (i.e. anti-fungal medicine to treat a possible case of fungal pneumonia, several antibiotics, etc.). And of course they don’t all have simple instructions like “Take in the morning” or “Take twice a day with food.” Some have instructions like to only take on the weekend, or only take if XXXXX symptom occurs, or take the day before starting this other med, or if you start this medication be sure not to take XXXXXX medicine. Whew!
What everyone really wants to know, though, is how Kendall is doing. Things have been up and down for him the past few days. His ANC (Absolute Neutrophil Count, derived from the number of neutrophils in his blood and his White Blood Cell count) has been stuck at 0 for quite a while now, meaning he’s essentially had no immune system. Yesterday that number moved up to 100 (still quite low, considering normal is between 3,000-6,000), but then today his ANC shot up 5,000. Amazing news! Kendall has been receiving shots for several days now meant to help his bone marrow start working again.
Unfortunately, Kendall has still been fevering, and he is struggling a great deal with nausea and not being able to eat (or being sick when he tries). Even though his ANC went up to normal levels, he’ll have to have at least a day or two of no fevers and eating a good number of calories before he can come home. It’s looking hopeful that he will be able to be home for Thanksgiving, though. His doctor told him today that they will wait until after Thanksgiving to readmit him for his next course of chemotherapy.
This round of chemo has been absolutely brutal. We learned that there is a very rare enzyme mutation that some people have that makes their bodies unable to flush out the particularly toxic chemo drug that was part of this round. They don’t routinely test for it because it is so rare, and the test is expensive and takes a while to get the results, but after Kendall has had such a hard time with toxicity levels and other side effects they went ahead and tested him a bit ago. Can you guess where this story is going? Yep, we just learned that he did indeed test positive for that enzyme mutation. I promise I’m not making this stuff up. We’re still not sure what that will mean for rounds going forward.
As far as how things are progressing with the transplant, all of Kendall’s siblings have been tested and we are waiting on the last results to come in (they have 2/5). They won’t tell us any of the results until they have all of them. We’re hoping we’ll be able to know by next week, but we’re not sure how Thanksgiving might delay things. They’ve told us that siblings have a 25% chance of being a full match, but I have to admit that the odds haven’t exactly been in our favor throughout this experience. Still, we’re hopeful.
*Update 11-22-20: Apparently when I took this picture I had missed a bag of five more medications, and the next day Kendall got NINE new medications to bring home from the hospital, with a tenth ordered and coming in the mail later this week. It’s insane!