Thursday, November 1, 2012

Running Round(s) {R4, Day 28}

Maybe you'll remember that a few rounds ago (round 2, I believe), I shared my "doctor speak."

Today, things were a little slow to get started in our morning rounds, so I um...took over.

Sam is a 6-year-old boy with AML here for Intensification Round 2, awaiting counts recovery. Today is Day 28 and he has an ANC of 80 and he is afebrile and he wants to get the heck outta here.

They laughed and agreed that today was not the day to go home. A jump from 18 to 70? Huge. A jump from 70 to 80? Not enough to kick a kid to the curb.

Darn. (Okay, I probably had stronger language in my thoughts...but this is a G-rated blog!)

So we got about our day. After Teacher Theresa's time, we had to head downstairs for an echocardiogram and an EKG in the Herma Heart Center.

It's pretty easy and it got us off the floor during the day (when we're normally not allowed to go!), which had its ups and downs. Sam really didn't want to go back to the floor. It helped that on our way back up, we ran into Miss Nancy, the music therapist. She and Sam talked about the music of the Harry Potter movies for a few minutes and then she promised to stop by his room later.

We had a lovely last-minute visit from Marci and Lindsay who were driving through the great state of Wisconsin on their way to their brother Adam's wedding in Minnesota! (Mazel tov, Adam and Melissa! Wish we could be there to celebrate with you!)

Sam resisted doing schoolwork today, but after a rousing 5 rounds of chess with Zeyde...he gave in and did some work.

When Miss Nancy was with us, she told us that on Thursday nights, she runs a group music therapy session on the 8th floor. Those kinds of things aren't usually accessible to HOT patients, since we're mostly restricted to our own space. After she told us, I went and asked our staff if they thought we could-maybe-please-just-this-once head off to the group session??? And they said yes. So at 6:30pm, we tripped off to the 8th floor...Sam wondered how many people would be there and would he be around too many other kids. So we agreed that if we felt that there was too much exposure, we could leave.

Lucky for us - we were the only ones!

Together they composed songs and sang ones that we already know and basically just had a good time.

Then Dr. L came to visit for what has become our regular game of Monkey-In-The-Middle-Sam-Makes-Up-New-Rules-To-Confuse-Delight-and-Annoy. It's a long title, but I think it will catch on soon. At least it wears me him out. I think Sam likes her a lot because he keeps up a running stream of trash-talk. Isn't that a sign of endearment? It sure is from Sam.

Even though I continue to try and manage his expectations, he's had it. He's done. Enough already. He wants to go home. And I can't blame the kid. So perhaps it is our last night on the HOT Unit...and perhaps not. Whatever happens, his body knows best. We just follow its lead. So far, it hasn't led us astray.

One of the songs that Sam and Miss Nancy sang together today rang true for me tonight...

Whoa...We're half way there
Livin on a prayer
Take my hand and we'll make it - I swear
Livin on a prayer
We've got to hold on to what we've got

Cause it doesn't make a difference
If we make it or not
We've got each other and that's a lot
For love - well give it a shot
We've got to hold on ready or not

You live for the fight when it's all that you've got...

We might be more than halfway there but we sure are livin' on a prayer around here....ready or not.
Keep on praying...


  1. Ahh, Bon Jovi says it all! Soon for home I'm sure you'll be :)

  2. Sounds like a pretty good day there on the HOT unit. Glad you got some NY love from my friends on the way to the wedding!

    I'll definitely keep praying for you this Shabbat, but may take a pass on the mashiv haruach umorid hagashem prayer... ;-)

    xoxo and Shabbat shalom from a drying out NYC.

  3. G-d willing you'll be back to being home with your four healthy children.