Here are the medical highlights from the week:
-On Monday Kendall had another IVIG treatment. This time he received it all at once, rather than being spread out over four days. Unfortunately, he did have a reaction to it this time. Nothing that ended up being too serious, but it did get awfully busy in that room for a while. It made for a long day as they had to stop the IVIG for several hours and wait for a steroid, Benedryl, and fluids to be administered and counter the effects before they could begin the IVIG again.
-Lots of radiation. The doctors did decide that in addition to the daily radiation treatments on his spine and hip, Kendall will also receive six treatments of whole body radiation right before his transplant. On Thursday Kendall also stopped taking his daily oral chemotherapy pill so that he can take the anti-fungal medicine (that would have interacted with the chemo) to hopefully help clear up the nodule that is still in his lungs.
-Kendall’s transplant schedule has changed again. As of right now they are planning on hospitalizing him for pre-conditioning next Friday, January 22nd (Day -6 to Transplant). The actual transplant day (referred to by the doctors as Day 0) will be Wednesday, January 28th. We have been told to expect that he will be in the hospital for at least a month (with no visitors allowed), but it may be up to three months depending on how his body reacts. It’s likely that he will have at least some level of graft-versus-host disease after the bone marrow transplant.
-Kendall has been neutropenic for most of this past week (meaning his ANC number is very low so his immune system is too suppressed to fight off any infections), and he has been fevering for the past four days. Kendall is unable to take Tylenol or any fever-reducing medications because his liver has been struggling and they also don’t want him to “mask” a fever that might indicate infection. That has meant some sleepless nights for me – checking his temperature every hour, calling the after-hours on-call Hematology Fellow, reporting to Kendall’s doctor, and waiting to see if we needed to leave for the ER; thankfully Kendall was tired out enough that he slept through most of it each night. This morning his fever went higher, so his doctors had him skip radiation and go straight to be admitted to the acute care ward of Huntsman Hospital. We hadn’t been there before today. When we first got there we were told that Kendall would most likely have to be hospitalized for the weekend, but after (many) hours of monitoring, tests (COVID test, his second chest X-ray this week, a CT scan, and a LOT of different labs), and getting intravenous antibiotics and fluids, Kendall’s fever finally broke and the doctors decided that he could come home. We had plans with the kids for “Daddy’s last weekend home” for a while, so we were grateful it looks like he will be home for those.
-Early this morning (before the trip to acute care), I was able to get my first dose of the COVID vaccine. This means that I will be able to get my second dose before Kendall comes home after his transplant. It won’t change much as to the precautions we have to take with (not) going places, sanitizing things that come into our home, etc., but it will give me some peace of mind. I wasn’t able to qualify as Kendall’s caregiver for the vaccine, or even because of my own pre-existing conditions that make me high-risk, but I was able to qualify as a “non-essential healthcare worker” for my work as a speech-language pathologist (I did call the Health Department before I made my appointment to make sure). So far my arm is sore and I’ve had a headache and been tired, but those latter two symptoms may just be because of my interrupted sleep for the past three nights. We’ll see how tomorrow goes, but even if I do experience more severe symptoms like a fever or nausea, it is so so worth it.
This next week will be pretty intense as Kendall prepares for his transplant, continues with radiation, has his central line placed, and does all of the labs and visits that need to happen before Friday. Our family will be having a fast this Sunday, and we of course welcome anyone who wants to participate in that with us. And keep those prayers coming, that we can all make it smoothly to Friday and we can get done everything that needs to happen between now and then. There are other stressful things happening for our family right now with family members beside Kendall, and there are times when I’m feeling stretched pretty thin. But push on we must! And it does feel good to actually be making progress toward something with Kendall’s leukemia. The bone marrow transplant will bring its own challenges, but we’re looking forward to having it behind us!
