Reaching back to 2 weeks ago, July 12, Sam had his first unscheduled hospital admission. 

This one was for low sodium. Turns out his kidneys were holding onto water and peeing out the sodium.  One of the chemos he takes in the first 4 weeks of induction, via infusion, is vincristine and it can cause low sodium (though it’s not as common, it does happen).  So on Tuesday July 12, after being discharged on Saturday July 9, and a day before his 17th birthday, after going in for a routine blood draw (he gets his blood drawn 2-3 times a week), he was admitted for low sodium .  It got as low as 128 (below 120 is the level where it can cause seizures, and even though 128 seems close, the numbers usually don’t precipitously drop by 8-10).

So he was admitted for 2 days. They were also watching his weight as he’s gone from 6’1” tall and  thin but strong/muscular 165 to 140. 

As Dr. Lacayo talked us through this, he put more context around it: many, many patients with B Cell ALL are admitted for the entire duration of their induction phase (which, in the case of Total 17 clinical trial, is 43 days), so being admitted for a couple of days after getting 3 days at home is actually a fortunate case. Perspective 🙂

It was a bummer that he spent his 17th birthday, July 13, in the hospital (that will get its own post) — our goal was to spend it at home, and we got super close. Yay for that!  He was discharged again on Thursday July 14th with instructions to “eat like Michael Phelps when he was training and put salt on that.”

Low sodium can also make him “difficult to rouse” so I had a conversation with the on-call weekend fellow on Saturday July 16 about what it means to be “medically difficult to rouse” as on Saturday night, July 15, Sam fell asleep on the couch around 10 pm and then when I tried to wake me up, he told me to buzz off in a more than usually drowsy sort of way. And then he fell back asleep.  Does this equal “difficult to rouse?”  I wasn’t sure. It definitely was different from my pre-leukemia interactions (not the buzz off part — those were frequent 😂 but the drowsy, quickly falling back to sleep part).  But “medically difficult to rouse” equals if you pinch his nail beds and he doesn’t rouse.  Makes sense. Thankfully he didn’t reach that threshold.

My mode is ask whenever there is a question — so Dr. Goyle, the fellow on call that weekend, and I became buddies as I called her 4 times :).