Transplant Plan

Thursday, February 9, 2023 · by John Lilly

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.

 

♥ 56 hearts

32 comments

Dirk Stoop · Thursday, February 9, 2023
Wow, I can’t believe how far some of this technology has come. Reads like a great and thorough plan! I hope everything goes super smoothly!
David Hornik · Thursday, February 9, 2023
Normal will be great. In the mean time, the Horniks are here for whatever. Just say the word.
Elizabeth Gomez · Thursday, February 9, 2023
How great that Kathy’s stem cells will be used!
Dana Lilly · Thursday, February 9, 2023
Thanks for the update. The details are very helpful and hopeful. Our hearts and prayers are with everyone. ❤️
Scott Kleper · Thursday, February 9, 2023
This is amazing to read. It sounds like you're receiving great care and the path forward is clear.
Dawn Robertson · Thursday, February 9, 2023
The science is extraordinary. A new immune system from the ground up, new childhood vaccines included. It’s incredible. We’re thinking about you all and sending you our best wishes and so much strength.
Frances Clayton · Thursday, February 9, 2023
Thanks for such wonderful and thorough updates - no small undertaking. Like many people, I have y’all on my mind often and the updates are helpful. Lots of love from Brooklyn.
J'Ann Schoonmaker Allen · Thursday, February 9, 2023
Thanks so much for the update, John. Each of you has really been on my mind. Sending lots and lots of love
L Robertson · Thursday, February 9, 2023
What a team. Cheering you on from the stands. Go Team Sam!
Suchi Sairam · Thursday, February 9, 2023
Every part of this - Sam, the whole family, the science - it just extraordinary ❤️ ❤️ ❤️ We will be rooting from around the world for this to as smoothly as possible! #TeamSam
nancy lublin · Thursday, February 9, 2023
Pulling for smooth transplant for Sam and easy recovery. And an honorary medical degree for John.
Maria Brown · Thursday, February 9, 2023
This is all so fascinating. You guys are so awesome at being incredibly informed, and of course, so very supportive.
Ellen Levy · Thursday, February 9, 2023
What an incredible explanation, game plan, and family effort all around! The Levy-Glidewell family is standing by to help however we can, whenever we can. #TeamSam
Paulo Correia · Thursday, February 9, 2023
Sounds like a plan. Make it so!
Cindy McLaughlin · Thursday, February 9, 2023
Oof, what a grueling but absolutely amazing process. Sending all of you so many good, healthy cells and lots of love and respect.
Jamie Merkel · Thursday, February 9, 2023
Appreciate the timeline....March 22nd on my calendar. Merkel Crew ready & waiting to help in any way we can.
Liz O'Donoghue · Thursday, February 9, 2023
Magic indeed! You all are amazing. Sending lots and lots of love and hope!
Bryan Rollins · Thursday, February 9, 2023
Wow! Big news. It's got to be a bit overwhelming to look ahead at a schedule like that. Here's to a 2023 with more good results and our hero Sam. We're with you guys through ever step.
Sarah Piel · Thursday, February 9, 2023
Thank you for this update, John. I’ve had a calendar ticking in the back of my head , knowing this was close. I think about you all every day.
Andrew Korb · Thursday, February 9, 2023
Thanks for the thorough update. Sending all our best wishes and lots of love to you all.
Michelle Stewart · Thursday, February 9, 2023
Thank you for the update. We love you and you are always in our thoughts - all four of you! <3
Jean Brady · Thursday, February 9, 2023
Team Sam is on the move! Yea!
Jan Schubert · Thursday, February 9, 2023
Thank you for sharing this good news, and brava to Kathy for your love and courage.
Jennifer McMurray · Thursday, February 9, 2023
Thanks for the detailed update. Science is amazing and is on your side! Glad there are some great trials that sound very promising. It’s quite the plan and I’m rooting for this warrior family thru this next chapter. Hugs to all of you!
Jessica White · Thursday, February 9, 2023
Strongest family I know!
DJ Patil · Thursday, February 9, 2023
Amazing what medicine can do. Don't hesitate to send word if there is anything we can do
joelle kaufman · Thursday, February 9, 2023
What an amazing plan - and its terrific that they are doing so much to avoid GvHD and hostile stem cells. Glad Sam's feeling well and hope you all get to enjoy the gifts of normal stressors like applications. Will be thinking of you all and hoping for great outcomes.
Andrew Willis · Friday, February 10, 2023
Wow. Seems like reading about wizards isn't nearly as magic as reading medical journals!
Russell Jaroszewski · Friday, February 10, 2023
it will a great day to see the follow-up in the Aug/Oct update when you announce the total success we all know Sam will have. Great update and bad-ass Mom!
Elizabeth Lilly · Saturday, February 11, 2023
J, this is amazing information and very well explained. You and Kathy should get an honorary degree in medicine! Kathy is so strong and I'm praying all goes well with her donation and the transplant for Sam. It seems like you've both planned out everything thoroughly for the coming months and it helps us to see what to expect, as well. Sam is a warrior and has handled himself with such calmness and grace throughout his ordeal. And I'm sure Zack is keeping you guys busy, as well, with all his activities! Much love to all of you!
Frederic GARDERES · Sunday, February 12, 2023
Happy to read you (your family) are planning over a year out.
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!
Ranjini Srikantiah · Saturday, February 18, 2023
Your team at Stanford sounds fabulous. The science being used here is incredible - thanks for sharing the details. Take good care of his infusion site and make sure all his healthcare professionals wash their hands! (sad but true - lack of hand hygiene is still a thing) We are all rooting for Team Sam!!! ♥️