If you haven’t heard, a bone marrow match has been found! I have to wait a whole year before I get to find out who is doing the donating, FYI.
I’ll be readmitted to UCLA on June 23rd, and the actual transplant should take place on July 3rd. There will be some outpatient fun, next week. And then once I’m
remanded admitted, I’ll have a fixed schedule of activities, all for the protocol of prepping me for the transplant. Because my relapse back in April showed some leukemia in my CNS (central nervous system), I’ll be getting some radiation on my head and then some full body radiation as well. Then, for a few days before the transplant, I’ll get the highest doses of chemotherapy I’ve had yet.
All of that is designed to truly wipe out any remnants of leukemia anywhere in my body, then wipe out my bone marrow as well. Once that’s achieved I’ll get the new stem cells. (They’ve decided to transplant donated stem cells and not actual true bone marrow.)
Interestingly enough, this is when the difficult part of the journey begins. There are risks that I could get sick, with such a diminished immune system. So, the medical peeps will be working hard to avoid all that. Some of my treatment will be preventative. And of course, any setbacks will be addressed. But after the transplant, I’ll go onto a gazillion different medications. There’s this concern about rejection, aka Graft vs Host Disease. Everyone gets a little GVH, so I should expect it. And, they’ll treat anything that arises. But that’s the biggest concern. Assuming all goes well, after around a month to a month and a half I’ll be discharged. However, I won’t be going home. I’ll be staying at what is basically a special hotel across the street from the UCLA hospital. Staying that close will allow me to be super close in case of a setback or worse. Also, I’ll have nearly daily appointments at the clinic. My stay there should be about a month long. Obviously all these ballpark timelines could be adjusted. Hopefully shorter! :-)
But even after I get back home I’ll have a while to go on this journey. Many things will have to be put off, for now. I’ll start off with a lot of limitations, even going out in public will be limited with some “rules”. Assuming I continue to recover, I’ll get better and better. My post-transplant care will extend to several important milestones. First will be 90 days after transplant. Then 100 days after transplant. Then 6 months, then 1 year. Many of my new meds will continue for the bulk of that time.
I’ll keep you updated and posted with any changes and updates, fo sho!
Thus far, we’ve had just enough to meet our obligations. But that’s only been when so many of you have helped out. Thank you! For those interested in helping out a little more, feel free to click the button below.
So, I have a nice long stay at UCLA ahead of me. It’s going to get harder before it gets easier. My wife especially has a tough job for the next few months. She’ll be my primary caregiver, 24 hours a day, for quite a while. She has literally thousands of miles to travel, to and fro, Camarillo to UCLA and Santa Maria to UCLA, and back and forth and back and forth. There will be much eating out, for her especially. The poor kids will be in a bit of limbo, crashing at my parents’ and sister/bro-in-law’s and getting to go home on the weekends, sorta. Hopefully our summer will be the bulk of it, and I’ll be headed home at the end of August or early September. Only the Lord knows.
Thus far, we have been truly blessed by all the levels of support, starting with the massive network of prayer that continues today. Of course the financial support has been fantastic as well; starting with so many of my coworkers donating their vacation hours, to help us bridge the gap from my sick time ending and our long term disability kicking in. Additionally all the logistical help has served us well. At home there has been many who helped care for our kids; staying at our home with them and feeding them.
We thank you so very much. The Lord has been so good to me. I have the most incredible wife, you truly do not know. I have the kind of wife that young men truly hope in their hearts they are blessed to marry.
Loved ones, I have an update on my schedule next week. We’ll be crashing at my parents’ place Tues-Thurs, at least. I have 3 days of radiation at UCLA, and that decreases our commute.
We may end up needing to go down on Friday too, that is yet to be determined.
Then we’re back for the weekend, before heading down to UCLA for the long journey that will be my stem-cell transplant, and recovery.