Transplant Plan
We spent a little time with our transplant doc last week and we've got a plan for transplant that I'll share here. In the meantime, Sam is on his 2nd 4 week bag of blina, hopefully keeping his leukemia at an undetectable level. He's been feeling really good these two months, which is amazing.
Anyhow, "Day 0" for Sam's transplant at Stanford is March 29 -- that's the actual day he'll be getting his new stem cells from Kathy, who will be the donor.
It's been an interesting process to go through and learn about -- Zack wasn't a match, and while we did find 4 10/10 matched unrelated donors (MUDs) on the registry who would have been good, Stanford often prefers to use 5/10 matched parents (haploidentical), depending on a few factors. The amazing benefit of this approach is that Sam won't need to be on immunosuppressants after transplant -- and since the whole goal of transplant is to rebuild your immune system, that means it can happen much more quickly than a transplant from a MUD. And shorter immune system rebuild means much lower chance for infection, and overall a sooner date for Sam to get back into the world like he wants.
If you're curious, the particular flavor of transplant Sam will be going through is relatively new & cutting edge. It's called Haploidentical Stem Cell Transplantation with Alpha/Beta depletion -- they take the stem cells out of Kathy's body and process them to remove the alpha & beta cells (using magnetic beads!) which can aggravate graft versus host disease (GvHD), but leaving in the beneficial gamma/delta T cells, natural killer cells, monocytes and dendritic cells. This process is what's really made parental haploidentical transplant work at all, because it really minimizes GvHD.
On top of that, we're doing an even newer technique that's in Phase 1 trial being run at Stanford: T-allo10 Cells Addback. For this, the lab will mix Sam & Kathy's T-cells in a petri dish a few weeks before his transplant, to see which of Kathy's T-cells are antagonistic to Sam's and which are not. They'll remove the hostile T-cells and let the non-antagonistic cells multiply -- then on about Day 7, they'll give those cells to Sam. It should improve engraftment and decrease GvHD even more.
Kathy & Sam will go through workups over the next month or so -- Sam will end up getting scanned just about every way possible to look for sources of infection, issues with his cardiovascular system, etc.
Here's what the timeline looks like:
Early March: pre-donation workups for Kathy; pre-transplant workups for Sam, and he'll transition off the blina. Additionally, Kathy will do a small donation for the T-allo10 trial, and they'll get started on that.
Last week or so of March: Sam will go into the hospital around March 22 to go through conditioning -- a series of chemo and radiation therapy designed to kill any remaining leukemia cells as thoroughly as possible. It'll also kill off most of his immune system, and definitely won't be a pleasant time for him.
(I think) at the same time, Kathy will do her stem cell donation, doing 1-3 days of 6-8 hours of apherisis -- we don't quite know when these will be scheduled, but looking at the calendar right now, these days where Kathy's getting her blood processed and Sam is admitted look like the days we might need the most help. TBD
April: we're anticipating Sam being in the hospital for all of April, and possibly a touch into May. With the particular processes that we're on, there's some chance of getting out before the end of April, but we'll see. Anyway, we'll hope/watch for the new cells to find their way into the bones and engraft by about Day 10, and his new immune system to start producing blood cells over the following week or so. Magic.
May - July: we'll be mostly at home, keeping Sam as isolated from pathogens as possible, and treating the effects of any issues that come up. The main things that transplant docs watch for is (1) GvHD, (2) graft rejection, and (3) secondary infections from bacteria, viruses or fungus -- things which are everywhere in our world. Our sense is that graft rejection is very unlikely, and we hope/expect GvHD to be modest given the protocols we're on. In terms of infection, we're just going to have to be as careful as we can during that period. I think Sam will start redoing all of his infant immunizations during this period as well. We'll also mark the 1 year anniversary of his diagnosis during this period, on June 29 -- quite a year.
August - October: this is the time frame we think Sam can head back into the world, cancer free and without many restrictions. He won't have to take many meds since his transplant comes from Kathy (so no immuno suppressants). We aren't sure about the specifics of any of this transition -- it'll depend on how well his immune system is functioning and hitting some pretty particular thresholds of cell production. But we're optimistic.
Given the start of the school year is August 9, it's obviously challenging to think about what to do, so we'll have to plan a lot of contingencies here. I think we're likely to continue math & science through Fusion, and try to do English & Chinese at Paly as in person as possible. But we'll see!
After that: we wait and watch for any signs of leukemia growth, as relapse is the main thing that will keep us up at night. We're trying now to think through possible post-transplant treatment that might reduce any chance of relapse. We'll see. But they'll monitor him weekly for awhile, then monthly, then a few times a year, then annually.
But also we will try as hard as we can just to get back to normal life. Sam's senior year & Zack's 6th grade. College applications. Graduation in June. It's exciting to think about "normal." There are miles to go between here and there. But we can see it.
32 comments
I am sure it is a welcome change from last June.
It is not over yet, but we are cheering for you!
Go Team Sam!