We're a little late on this update, as we're nearly 7 months after Sam's bone marrow transplant, but here's the headline: Sam's doing well and there are no signs that the leukemia is there. (As you'll recall, they take bone marrow samples at 1, 2, 3, 6, 9 & 12 months to take a look to see whether there are any signs at all -- this is the 6 month biopsy, and it came back at zero detected, like the others before it.

It feels crazy & amazing to write that -- and it's just a jumble of emotions packed into it. Gratitude & relief & joy & normalcy & nervousness even to say it out loud and tempt fate. We don't really know -- and won't ever know -- whether the leukemia will grow again, but every milestone like this is magical and wonderful and hopeful. 

That's all amazing. Also amazing that Sam continues to do extremely well with his senior year of school and college applications -- his first acceptance came back last week. (If you ask him, he'll tell you why it's no big deal and it's a safety school and everyone gets in, blah blah blah -- but it's a major milestone for him & us as we head into full on college application season. Yay!) 

And Zack is starting to really cruise in 6th grade and soccer -- riding his bike on his own all over the place, talking with his friends on their Apple Watch social networks, and playing lots and lots of very high level soccer. Kathy & I are starting to notice more articles on the downstream effects of cancer on siblings -- it's hard to know how 11 year old Zack has processed the past year, or how he'll process it when Sam heads off to college less than 12 months from now. It's a lot to handle for anyone, and he's doing really well.

So.

We're happy and generally healthy and making progress on all fronts -- it's feeling more normal around here than it has in ages. We're grateful for all of this, and our communities of care givers at Stanford & beyond for getting us here, and for all of you, too, more than you'll ever really know.

But it's also worth explaining why we're a month late writing our 6 month update. 

About a week after Sam got his bone marrow sample taken, our bone marrow transplant doc called to talk us through the results of the NGS test -- as you may recall from previous notes, that's the Next Generation genomic Sequencing test that looks for DNA level matches -- it's a resolution of about 1 part per million, as opposed to traditional flow cytometry, which is about 1 part per 10,000.

Our doc (Dr. Bertaina -- she's the section chief for stem cell transplants here and co-director of the Bass Center, which does all childhood cancer and blood diseases, and she is amazing in every way) reported that the NGS result that came back was ambiguous -- genuinely ambiguous, and she didn't know how to fully interpret it. It turns out that there are two types of NGS scans that we do -- looking for the initial genomic sequences in both T-cell and B-cell populations -- and the T-cell scan came back with 2 parts per million, with some confidence interval of less than certain. Obviously when you hear any non-zero number, lots of crazy things happen; your breath catches, your heart skips a beat, and you just ask her to repeat herself. 

The summary here, though, is that NGS is so sensitive, and still so new, and the populations of patients with leukemias like Sam's are so small, that sometimes spurious results come back. Sometimes these small numbers matter and grow over time. Sometimes they go away. The number -- just 2 sequences found in a million -- was smaller than any positive result we'd seen during Sam's treatment, and it was in the T-cell population, while his disease was in his B-cells (which were still showing zero as we expected.)

So Dr Bertaina, after consulting with Sam's other oncologist, wanted to run the test again, do another biopsy and scan, and see what it said. Long story short: Sam had the biopsy the following week and then last week it came back negative for everything.

The days in between were rough for me and for Kathy, honestly. Because the disease signal was so faint and possibly not real signal, we didn't want to get everyone worked up about it, so we kept things pretty close. And we didn't want to get ourselves worked up about it either. Still, we found it tough. Lots of emotions and worst case scenarios we thought we had put away came flooding back, lots of worry, our nervous systems back on the high alert we'd been in much of the previous year. 

And so it felt really nice when Sam reported that the excellent results had just been updated in his medical charts (Adulting Skills Graduate Level -- being responsible for your own medical records!). Felt like we could breathe again. Gratitude, gratitude, gratitude.

Later that day I asked Sam if he was relieved and feeling better after the result -- he said "I kind of forgot we'd done that test....I mean, when we did it, I figured it would all be fine and then just forgot about it."

An amazing response that I can't really get out of my head since then. Incredible, really. 

We've written about this some previously, but we've learned some things about long term illness -- going through it has a way of stripping all the artifice and pretense from life. You have to talk about hard things all the time in a way that's as honest as you can possibly be. And maybe the most core conceit that we all tend to have about our lives & our families is that tomorrow will come, and the next day, and the next week, and the next month. But with serious long term illness, it's impossible to escape the truth that tomorrow is not certain, not a given.

The very next thought, of course, is that that's true for us all. The future is a gift, not a given. 

And the other truth that has become really clear to us is perhaps obvious: that today, Sam is Sam. Or more broadly, the time we have right now is the time that matters, and is really the only time that ever matters. 

So: phew. Sam's in really good shape, other than being beyond bored of being in the house. Should be able to be back at Paly IRL in the next couple of months (his immune system is looking good, progress every time we check). 

Today a new Mario game came out, the first new Mario game in a decade, more or less -- so we spent some time playing that instead of doing more college application work. We've got our halloween costumes mostly figured out, maybe, and are starting to look to the holidays.

And really daily we're  learning from and trying to channel Sam's approach to all this and to life more generally.

👊