Monday was physically a very tiring day. After getting up at 4:20 in the morning so we could get to Kendall’s very early cervical MRI, we ended up being gone at the hospital for 15 hours. Long hospital days are hard, not just for Kendall and me but for our kids. Having Grandma Jeanne home with the kids (and our other Grandma stopping by to help with homework) certainly made a huge difference in how smoothly their day went, and also eased my mind that things at home were getting take care of as they should.
In addition to the physical exhaustion, though, a lot about this experience has been mentally and emotionally tiring. Just yesterday Kendall’s entire treatment plan changed multiple times, and our day started off a bit differently than expected when he woke up with a fairly high fever. Kendall’s next hospitalization has been up in the air and changed so many times in the past few weeks (and changed multiple times just yesterday). As of right now the doctors are trying to figure out what to do for (with?) him next, and he does not currently have any hospitalizations scheduled. (More on this in a minute, but the treatment he will be starting tomorrow is supposed to be done while he is in-patient in the hospital. My theory why they are not hospitalizing him today like they first told us is because of the bed shortages at Huntsman. I don’t want to get political here at all, but the hospital situation up in Salt Lake is pretty bad because of COVID. They are really understaffed and it’s affecting the care of not just COVID patients, but other very sick people like my husband. Please wear masks, wash hands, and social distance in public!)
A lot has changed after the things we learned at the appointments and various tests with neurology on Monday. They still have a lot of questions and will be doing a lot more tests today and in the coming week(s), but they did confirm that Kendall has a significant amount of immune neuropathy. We hadn’t realized the extent of the damage until they did all of their testing. Essentially, his body is attacking his own muscles and nerves. The running theory is that it is a result of one of the chemotherapy drugs he was given during his last round (which means he had allergic or adverse reactions to at least three of those drugs from that round – no wonder he was in such bad shape during that hospitalization). The neurologist is recommending that he no longer have any neurotoxic chemotherapy drugs. This complicates things, because ALL of the chemo drugs in the Hyper-CVAD regimen used to treat his type of leukemia are neurotoxic (except the oral ones he takes to target his Philadelphia positive chromosome).
There is also debate about whether doing radiation will weaken him too much. It’s a fine balance when getting an allogeneic bone marrow transplant (especially when it is only a half match). Kendall needs to be as strong as possible beforehand, but they also have to completely wipe out his immune system so that his body will be able to accept the new immune system. That’s what the high levels of chemotherapy in his next round (now halted) were meant to do.
As far as the immune neuropathy, Kendall will be starting an IVIG (intravenous immunoglobulin) therapy to hopefully stop the progression of the damage. Modern medicine is really amazing. It can be easy to get caught up in the frustration of things constantly not working out how we hoped, but aren’t we grateful that we’ve had so many options? That IVIG even exists as a therapy treatment is incredible. IVIG is a blood product that they prepare from the serum of up to 15,000 (!!!!) donors for each batch, meant to help patients with antibody deficiencies. And Kendall will be getting a lot of it. Just the amount of blood he has received has been staggering. So grateful it has all been available.
The doctors are optimistic that this IVIG treatment will also reverse some of the neurological damage (we’re hoping all of it?), but they don’t know what will be possible until we see how he responds to treatment and they’re able to do more testing. As of right now Kendall will do 4-6 hour infusions of the IVIG outpatient for the next four days, and then they will reassess how to move forward.
Kendall will also continue with those daily B-12 shots. I gave up on giving those after a traumatic incident of the medicine running down his arm during one of the injections. When our home health nurse yesterday had the same problem we figured out that it was actually because of a faulty batch of needles we had been given, and wasn’t just my error. I’m perfectly happy to continue having home health administer it, though. There are limits.