Well, Day 1 for the second round of chemo (of 4) in the second overall phase (of 3 -- phases are about 10 intense weeks, then 10 intense weeks, then 2+ years that should be more manageable) -- Day 1 didn't go great. 

The way these rounds go is that they do a lumbar puncture (LP) to put chemo into Sam's spine (because leukemia likes to hide there), then a few hours later they do a 24 hour infusion of something called High Dose Mehtotrexate (HDMX).

Started off strong, working to get ahead of the nausea this time, but had a new medication that really wiped him out. But the lumbar puncture didn't work. They tried 4 times (!) -- big needles into his spine each time -- but didn't manage to get the right spot (you can tell you're in the right spot because you get cerebrospinal fluid (CSF) back when you poke, and they didn't get any). 

Lots of things this could be -- they could have been in the wrong place due to scar tissue, there could have been a sac (like an air bubble) in the way, or he could be low on CSF because of a leak (unlikely, as he's not showing any symptoms of that). 

The net of it is that they're going to do an MRI tonight just to get a clear picture of his spine, and then likely they'll ask Interventional Radiology (IR) to do the LP tomorrow. IR can do it with more precision because of the real time imaging they can use. Assuming all that is a go, we should be able to start the HDMX tomorrow afternoon and only be delayed a day on this round (so maybe Friday or Saturday to get released instead of Thursday-ish). 

But time will tell; we should have a better sense of things in the morning. For now, Kathy & Sam will get him an MRI at the hospital in an hour or two and we'll wait for the report.  One day at a time; moving methodically through his treatment; dealing with challenges as they arise. 

That's the logical way to say it, of course. The emotional journey is different, and this was a rough day for Sam, who's had something like 15-20 lumbar punctures over the last 3 months. (And actually got one when he was just a couple of days old in the NICU, but that's a story for another time.) He's had enough for a lifetime for sure. More ahead, and he wasn't feeling great today, but he'd cheered up by the time I came home at 7p. Ups & downs will happen; he's showing extreme resilience (and lots of humor) throughout.

We'll post updates tomorrow. Obviously a stressful day but we don't think worrying in the big scheme of things for now. I anticipate we'll get back onto the chemo schedule tomorrow.

And thanks again to Dr. Kara Davis for talking us through the unexpected twists & turns of today — made a huge difference!