It's been a minute since our last update!

At a big picture level, things are moving along as we expected. It's been a good period for Sam & all of us -- he's feeling good, no detectable leukemia, working on school, and just generally getting ready for the transplant in a few weeks. 

For a little more depth, I thought I'd share some of the detail of the things we look at and how we think about them -- attached as images below, since CaringBridge doesn't let us do inline. 

Anyhow! The first picture is the schedule for March -- gives you a sense of what our day-to-day will look like starting next Tuesday (3/14). The brown is Kathy's schedule, as the donor, and the green is Sam's.

Some notable items: 

• 3/14 -- "Line placement in IR" -- Sam's getting a Hickman -- it's a surgically inserted central line in his chest that has a couple of different ports on it. This is in addition to his port in the other side of his chest that he's had since July. It'll be a minor procedure to do, but under general anesthetic
• 3/15 -- Sam's doing apheresis to pull out T cells for the T-allo10 clinical trial that we're on (reduces GvH odds & severity)
• 3/16 -- Kathy getting tests in preparation for her donation, including a pregnancy test. Offered without comment.
• 3/19 -- Moving into the hospital for awhile!
• 3/20 -- 3 days of TBI (total body irradiation) for Sam-- not our favorite thing to think about, but necessary. And various chemos start as well, for 9 days. Concurrently, Kathy going through apheresis for her cells for the T-allo10 trial
• 3/23 -- Kathy starts taking G-CSF for 5 days to stimulate stem cell growth (go go go!) -- we're anticipating her feeling fluish & tired during those days
• 3/27 -- 1 to 3 days of apheresis for Kathy to collect cells for the main event
• 3/29 -- Day 0. LFG.

By contrast, the past few weeks since the beginning of the year have been (relatively) mostly unscheduled. It's felt like a lot of waiting around; things get started in earnest next week.

The other thing we thought might be interesting to share is parts of the data we've been looking at to track Sam's leukemia -- in particular his MRD (minimal residual disease).  The way it works is that when Sam was first admitted they looked his bone marrow (collected via a long needle into his hip) to see what DNA sequences represented leukemic cells -- they identified 3 sequences in his B-cells and 1 in his T-cells. The graph below shows the number of clonal (leukemic) cells at the various testing points -- admission on 6/29, after 2 weeks on 7/15, end of induction in August, after the methotrexate in December, and then after the blina courses on 1/19 and 2/23. 

It's on a log scale, and it's showing how many problematic cells there are per cell overall -- so 1 is pretty bad, while 0 is what you want. You can see here pretty clearly why we were feeling good in August, very stressed in December, and better now after the blina. [Side note: blina was only approved by the FDA in 2014, and at the time was the most expensive cancer drug ever (still not cheap!). Kathy & I have noted many, many times how grateful we are that we're on this journey in 2023 instead of 2013, or 2003. The timing really matters for our particular situation.]

I've also included a tabular form of the information -- a few interesting things. First, you can see the actual DNA sequence! [Gattaca is a great movie, btw, and what I think of every time I read these things. Hits different now for me than it used to, though.] Second, you can see the actual numbers and confidence intervals -- for reasons that aren't clear to us, they collect different numbers of cells each time. This time it was high -- 2.8M -- so there's a 95% confidence interval that the sample has between 0 & 1 clonal cells per million. (Actually it says between 0 & <1 but I don't really know what that even means, but seems good!)

Anyway, things are kicking along. As I mentioned up above, it's been a really good period, and we've been trying to get out and do fun stuff (also, Sam reports that he's now top 200 in North America in Overwatch, which I'm pretty sure makes us candidates for Parents of the Year). 

We got to the SJ Earthquakes game on Saturday (MLS is not good soccer! But it's fun to go and watch the team develop) -- our nephew Andrew came with us and mentioned to Kathy: "Sometimes I forget Sam has cancer." I've had that thought a few times these past couple of months. It's no exaggeration to say that when I notice myself thinking that it's about my favorite thought of all time. Lifts my heart.

My mom used to quote Kurt Vonnegut: “And I urge you to please notice when you are happy, and exclaim or murmur or think at some point, 'If this isn't nice, I don't know what is.” Amen to that. 

This past year has been a pretty odd one. In a lot of ways, Kathy & I feel like we've pressed pause on our lives. But that's really not right. The world keeps turning, and we all keep developing. Sam's nearly finished with pre-calc (this week) and close to finishing up his junior year. Zack's starting spring soccer in a very challenging division (but they'll hold their own), and about to finish elementary school and head off to middle. Kathy & I both developing as well. I look in the mirror sometimes and notice all the gray that's come since last summer -- I mean, I had a fair amount before, too! And gray hair is better than whatever's going on in my growing bald spot. 

But Kathy & I both have more gray hair, and more worry lines. Our hearts are definitely heavier than they've ever been. But I think they're fuller, too. We understand our boys and each other better than before. We learn more about them every day. We notice more acutely other families going through their own challenges and victories. It's been a complex time, and I honestly think it'll take years to process the events and emotions of the past 8 months, and the months ahead, too.

But we're on the way, feeling good.