Not everyone reading these posts knows me very well, so what you might not already realize is that I. like. order. Like a lot. Organization. Schedules. Predictability. Above all else, control (I’m a little embarrassed to admit that). Seriously, back to school has always been my favorite time of year because I get to put new systems and schedules in place (labeled and organized bins make me so happy, meal plans are so calming….). I have started doing individual counseling, and in my first session the counselor guessed that I was an oldest child (is it that obvious?) and we talked about how difficult it has been throughout this experience to not feel like I have any control over so many things. Kendall’s schedule and symptoms change daily, sometimes hourly. Just when I think I know what a situation is going to entail and what I need to prepare for or accommodate, or when I try to prep my kids for when or how long Kendall and I will be gone, or I think I know what our week (or even day) will look like, everything changes. Over and over and over again. No predictability, never any sense of “getting on top of” anything.
That’s why this Christmas present of mine has been so incredibly wonderful, and not just for helping me be more active. It’s literally saving my sanity. Yes, I’m late to join the smart watch bandwagon. But seriously, this Fitbit. is. amazing. Because you know what? I can COMPLETELY CONTROL how many steps I take (which are a lot more than they were now that I’m tracking them), how many cups of water I drink in a day, or how long I get my heart rate in my “optimal zone” for exercise. A huge thank you to the Santa’s elves who gifted it to me this Christmas.
Speaking of things constantly changing, yes, Kendall’s entire timeline for transplant has, once again, completely changed. The four potential donors from the Donor Registry have all fallen through: two said they were unavailable, one had moved to India (international donor situations are too difficult right now with COVID), and the fourth was actually a woman with several pre-existing conditions that disqualified her as a donor. So the team is moving forward with one of Kendall’s siblings who is a half-match (and we are incredibly grateful to them for their willingness to donate). The original timeline said that Kendall would be admitted to the hospital this Wednesday the 13th and then have his transplant on the 19th, but that has changed to being admitted on the 27th of January and then having his transplant on February 2nd. That will let him get more radiation and stop his daily oral chemotherapy pill so he can do some anti-fungal treatment (that would otherwise interact with the chemo drug) for the nodule in his lungs, as well as do some more IVIG therapy before the bone marrow transplant.
We also learned that we are the only exception Kendall’s transplant doctor has made to requiring a patient to be no more than 20 miles away from the hospital post-transplant. We were already grateful, but it really does seem miraculous now that we’re being given this exception. Hopefully things will go smoothly with us being able to stay in our home in Provo (although with our track record we’re counting on at least a few bumps along the way).
Kendall’s about to start his third week of radiation, and as he was warned the effects have definitely been cumulative. He’s pretty sick non-stop now, and he’s not looking forward to two more weeks of daily radiation followed by whole body radiation (the doctors are still deciding if he will get one dose of that pre-transplant or six). It’s hard for him to be able to do the physical therapy and conditioning he needs to each day when he is so nauseous and in so much pain. It’s hard watching him go through this and feeling helpless to take away any of that pain or discomfort.
I imagine many people reading this have felt similarly as we have shared our story. It’s hard and frankly uncomfortable to watch people you care about go through hard things. I wish I had words to convey how much you have helped us, how deeply and permanently impacted we have been by those who have reached out to us in various ways, the continual prayers, and the unique and very personal ways people have served our family. It’s humbling to be in the position of receiving help rather than offering it, but I feel such love for everyone who has followed the Savior’s admonition to “mourn with those that mourn” and “comfort those that stand in need of comfort.” And those who have rejoiced with us and cheered us on. And listened. And supported and uplifted us in dark moments. Helped us financially (many anonymously, whom I wish I could thank personally). Brainstormed ideas. Facilitated connections. Sacrificed in our behalf. It’s been awe-inspiring to be part of something that has become so much bigger than a surgery or a cancer diagnosis. I honestly hope we’re all growing a bit from sharing this “smelting” experience together. I mean when I say we love you and are so glad we made the choice to share our story publicly throughout this experience. I cannot even begin to imagine trying to do this on our own.