Yes, we took the plunge and shaved Kendall’s head last night. It was a bit overdo, since he had reached that stage of chemo treatments when handfuls of hair would be left on the floor after each shower, found on his pillow, or the dandruff of hair on his shirts. Clara declares Dad’s head is “fuzzy.”
Kendall did have his PET scan on Thursday, and we got some preliminary results on Friday (during the twelve hours we spent at the hospital, his fifth day there this week, but I digress…). The first big news was that it did not appear the cancer had spread or would have caused the new fracture in his spine. We’re still not sure exactly what caused it or how to prevent future fractures, but for the time being his brace is helping him manage the pain.
The PET scan also showed that the cancer mass in his hip (which a friend pointed out to me I have neglected to ever mention in these updates – sorry!) appeared to be smaller. Kendall met with a radiation team to discuss what will be involved if they decide to do radiation there, but the doctors haven’t decided yet if they will pursue that route. Also on the PET scan were evidence of fairly severe esophagitis (most likely a side effect of one or two of his medications), and a small nodule in one of his lungs that didn’t look like it was cancerous but may be a small blood clot that they will continue to monitor. He doesn’t currently have any lung issues like chest tightness or coughing, so they don’t feel like they need to directly treat it right now. So, overall good news from the PET scan. The intense chemo regimen Kendall has been doing appears to be at least somewhat effective, which is promising.
It was a fairly long week of procedures (multiple transfusions, labs, chemo infusions, various imaging, etc.), but overall Kendall’s labs on Friday were looking better than the concerning numbers from a week ago (i.e. liver function, kidneys, sodium levels, etc.). Kendall also started taking a daily chemo pill that targets his Philadelphia positive chromosome mutation. There is another, newer version, of that medicine that we just got insurance approval for him to try. As of right now they expect he will need to take that for the rest of his life.
We also learned a few other things from the doctor. Remember when I mentioned that Kendall’s type of cancer is very rare? On Friday his doctor told us that there have only been FOUR documented cases in the ENTIRE WORLD, ever. Kendall is the fifth, but there are things about his presentation that are completely unique to him. They weren’t kidding when they said it was rare!
Lastly, we also learned more about bone marrow transplants. We had no idea it was such an involved process (up to three months in the hospital, and a full year afterward for recovery), or that it is one of the single most expensive procedures that can be done. Crazy! Kendall’s doctors are still hopeful that he may not need one, but they haven’t ruled it out. Of the four known cases of his type of cancer, two of the patients had bone marrow transplants and two did not. Two had their cancer go into remission and two did not, but it didn’t seem to coincide with if they had a bone marrow transplant or not. We’ll have to wait and see what happens.
In the meantime, we are really enjoying having TWO WHOLE DAYS IN A ROW with no scheduled hospital visits (I know, amazing), where we get to enjoy General Conference talks about faith and peace and other pertinent topics, and doing family traditions around this weekend. It is really feeding our souls and giving our family a nice break from everything. Hopefully everyone is also having a great weekend! (And for anyone interested in watching along with us, go to this link: https://www.churchofjesuschrist.org/broadcasts?lang=eng&video=October-2020-General-Conference&mode=watch)
-Suzanne