Sam’s been back home for a week now; feels like our first normalish week in ages. Everything is going well with the transplant; as well as we could possibly have hoped for. He’s eating a little more each day, although not much honestly - things all taste kind of gray to him - reports are that this might last 60 days before it starts to get much better. He’s still nauseous some of the time, but we are managing it reasonably well with meds. He’s been taking walks in the neighborhood with friends. And is talking about walking the Dish tomorrow - a risk conversation with us that is…ongoing. It’s amazing to me that he retains the teenage sense of invulnerability - I think it’s been essential, honestly. (Although it doesn’t quite mean that I think walking the Dish is a very good idea! Balance)
The big milestone this week was that we got back his chimerism test - a measure of how much of his blood is derived from Kathy’s cells instead of his original ones. The idea is that you want as much as possible to be the new immune system, which should be better at finding any residual leukemia - and his came back as 100% new system, zero old, which is what we’d hoped for. (This is in his peripheral blood - they’ll check in his marrow in about 10 days, but they expect the numbers to be similar.)
Amazing!
The next major milestones are in a couple of weeks: on Monday 5/1 they’ll do a bone marrow biopsy to let them check for leukemia via NGS (the one in a million sensitivity test). On Thursday he’ll get a bunch of Kathy’s processed T Cells for the T Allo10 trial we are on (Sam is patient #11.)
That trial is pretty interesting because it seems to really reduce the chance of graft versus host disease, but also speeds up immune system reconstitution. And that’s kind of everything: absolutely minimizing time with a developing immune system means less chance for secondary infections and complications - it’s huge. The researcher is a visiting professor from Italy and she’s been awesome to talk to. 
We’ll get the NGS results back around mid May or so - that’s a date we are keenly anticipating 
From a health perspective, we’ve got 3 main areas we think about: (1) managing the transplant, nutrition, nausea, etc - all is going well, (2) trying to keep him from picking up a virus or other infection, since that would mean more hospital time - most transplant patients do head back at least once - another reason we are happy to be on the T Allo10 trial, and (3) monitoring his blood month to month (and later quarter to quarter and then yearly) to watch for the leukemia. 
Hopefully it’s gone, for good. But we don’t really know. And may not ever know for sure. But one of the things we’ve been learning acutely, again and again, throughout the past year: nothing is certain. We have today. And probably tomorrow. And probably next year and the year after and decades after that. But we don’t know and we can’t know, for this and for everything else in life. 
It’s okay. 
So: we are focusing now on Sam getting his junior year of school finished and setting up his schedule for being a senior at Paly in the fall (astonishing to me, in all ways). And working with a college counselor to figure out a plan for what’s next. And to also celebrate Zack as he finishes up elementary school with an outstanding year and heads to middle school, and manages to fit that in between all his soccer matches. 
Also, a key update: Sam and I are nearly finished with Super Mario Bros. 21 star coins left.