Sunday, April 21, 2013

Wondering {day 20}

What on earth are you just waiting around for?
Chemo treatments for AML are very intense. It drops the immune system down to a complete ZERO. When we say that we are waiting for Sam's "counts" to recover, we are waiting for some neutrophils and white blood cells to grow. It all adds up to an ANC - absolute neutrophil count. This magic number is currently at zero, and that is just what the doctors are expecting.

So we wait around and entertain ourselves with the help of friends and family and nurses....
Judy brought Sam this cool new frog that plays "don't worry, be happy"!
Is this waiting around normal?
Yes. Sam didn't have an ANC until Day 26 in the fourth round. We know that these things just take time.

Why does he keep walking laps? 
Sam is not allowed to leave the floor/unit when his ANC is non-existent. (An occasional late-afternoon/evening foray has been okayed.) In previous rounds, he's gotten exercise by doing silly things, playing catch (or monkey-in-the-middle), jumping on the Wii Fit board, or whatever else has occupied his body and mind. This time, he's into walking laps. Who can argue with the kid? There's an accounting board and many kids spend time walking in circles around the unit. Whatever works, right? Tonight he decided 36 was the magic number. Considering that 22 is a mile, I think he's doing great.
Why does he keep eating hamburgers?
Some kids with leukemia take steroids. For AML, that's not part of the treatment. So this is not a steroid-fueled-eating-binge. Sam has just decided that hamburgers and apple slices taste good. He also ate some pudding and popcorn today. I'm not arguing with him when he wants to eat -- but I do encourage variety. He just doesn't always comply! The nurses and doctors giggle and then I remind them about the day, in the first round, when he ate 9 plums. This is just Sam's way. He will resume normal eating once he gets home, I hope. (Oh yeah, and we are usually mostly vegetarian, so the hamburger thing is even more funny to me....)

Do you know how hard it is to play hangman against someone who makes up his own words?
He has made a list of words. Some are real. Some are not.
What was today's creative-hospital-make-do?
 Today, Sam complained that the towels are too small. He's not wrong. (And NO, I am not bringing my own towels. There are limits. I do not want to wash his towels.) Thanks to the genius suggestion of our nurse, I used silk-tape (the medical tape that they all use) to tape two towels together for Sam's bath. He was overjoyed at the full-size towel. This picture illustrates the size of the towel I created for him in contrast to the actual towel sizes. You've got to love it, right?
Is it all fun and games?
No. Sometimes there are dressing changes and doctors who poke at owies. Today there were plenty of moments in which Sam felt "poor me"-ish. I let him give me the list of irritants, of wishes for going-home, of annoyance with the pole, of frustration that it takes so long for the next hamburger to appear, of a desire to just sit and watch tv and shut out the world.....and then we moved on to giggling and tickling and playing and reading and eating and yes, even some Sponge Bob TV-watching (oy, there was a marathon on today. I'm so tired of that yellow creature.)...and we just deal with it.
And so we wait....waiting is expected.
Which doesn't make it any more fun but at least it makes it a tiny bit less scary.
We are so grateful for his spunk and spirit, his energy and his enthusiasm. They give us hope and help us rise above the day to day....


  1. Hey Sam, if you choose words from the old Batman series for Hangman - things like zowie and kapow - you will ALWAYS win ;). Something to consider.

    Not that I'd know anything about that of course.

    Hey, I grew up named Robin in the 70's... I was Batman-OBSESSED.

  2. Thinking of y'all. Today and always.

    Sam's beautiful neshama shines through these posts along with his beautiful smile. And I can understand the poor-me moments -- heck: we all have those, even those of us who aren't dealing with something as difficult as Sam is -- and I love that you listen to them and let him express them and then move back to tickling and laughing and having the fun you can have. Your whole family is an inspiration to me.