Monday, April 15, 2013

Whoosh {day 14}

One of the interesting/sad/scary things about being in your own little hospital world is that outside events feel very far away. I did not glue myself to the tv as I would have done if we'd been on the outside, but we were very aware of the terrible events in Boston today. My heart goes out to everyone, my prayers are with you. Janet Johnson ran the Boston marathon today wearing this bib:
 I don't know a lot about marathons, but I do know that I checked all the websites (thanks, Google) and I believe that Janet is okay. Her daughter is David's fifth grade teacher, and I'm thinking of all of them, holding them in my prayers. I know that she and her family have been praying for us...tonight we turn that around. So many friends and loved ones in Boston today....much love from our little corner of the world.
Today started like this....a little gray...
And I was nervous. Sam seemed a little crabby and sleepy this morning. A conversation with the nutritionist got me a little bit worried as we started strategizing to just get some darn food into the kid. His not-eating hasn't been due to nausea, he says he feels okay. So it's something else that he can't quite pin down....he's just feeling crummy. He's been running a little fever for quite some time, and that can get you down. We know there seems to be a redness around his line, so this afternoon there was a whole crew to observe his dressing change to check it out. (I will spare you all the picture that I took, it was mostly for the purposes of being able to compare it tomorrow.)
He was still sleepy and crabby in the mid-morning part (suddenly this blog post got out of order, but humor me, okay?) when the room-cleaning smell drove us out of our room (unusually strong today?) and we took our book to read into the playroom. (We are reading a great series now, the first one was called Toys Go Out. Very cute!)
But slowly...slowly....he started to return to himself. A visit from the music therapist was great for him, and he drank a smoothie that I made in the blender (aha -- I realized I could totally replicate a home-food with the blender that is available on the unit. Whew) -- a whole lotta calories definitely helped, I think.

And then, in walked Rabbi Steve with a whole bunch of silliness to help us celebrate Israel's birthday! Israeli chocolate! Bamba! Bissli! And of course, hats and noisemakers and sunglasses, which he instructed Sam to hand out to every visitor. Because of course, like the State of Israel, Sam's future is BRIGHT.
I think the shirt says it all: Team Awesome

 Things got even better after that. He read me this book....
We took the pulse-ox level of the extendable fork (thanks, Jen G!). It didn't work. But you gotta love the patient and amazing pediatric oncology nurse who was willing to try.
 We told gobs of jokes. This book below is the creation of Miss Melissa, Sam's incredible Sunday School teacher. She brought in the pages and his whole class illustrated them. This version is Sam's, and it's the original. Copies were made and they're being sold for donations to the MACC Fund -- you can get one at Am Shalom. Amazing!!!!!
 A project was devised by the Child Life Specialist -- she suggested that we make a duct-tape-wallet. By "we" she must have meant "mom" and check it out -- I did it! She provided us with instructions and Sam cheered me on as I created this funky little wallet for him to put his stuff into. Cool, huh? I think I have a new hobby. Or not. I insisted that he show it off, since I worked so hard.
 The other cool thing that happened today was this gift from the author and illustrator of Z is for Moose. You'll recall that Michael explained that it was our new favorite book, and a little twitter conversation with the illustrator Do you see what "S" is for? That is incredible. Sam was so excited to have his very own copy of this really funny book. Thanks, Kelly and Paul!
 It got better. Sam looked over and said, "you know, I think I want a hamburger."

I said, "wha!?" He said, "no, really, a hamburger. From the kitchen. With ketchup."

So I ordered the (mostly vegetarian) kid up a hamburger. From the food service.

And he ate it.

Then he said, "can I have another hamburger?"

I know, right? I was just as shocked as you are.

So I ordered up another one. And he ate a little more than half of it.

I think the nutritionist is going to plotz tomorrow when she sees all that was consumed!

So we went on a little walk to work off the hamburger, and we did 11 laps, which is half a mile. Not bad, right? (I did have to beg for the last lap. I thought 11 was a nicer number than 10, but Sam argued that 10 is a nice even number. Argh, math arguments!)

That "whoosh" in the title is me letting out my held-breath just a little. We're not out of the woods in this cycle yet, of course, but it's nice to feel a little return to "hospital normal" with a kid who seems to be feeling better. I'm still holding my breath just a little bit, you never know, but....whoosh.

I know he's feeling much better because at 9pm he was still awake and asked for a snack (apple slices) and that is much more my Sam. His temperature has gone down considerably, although it is still not "normal" (like normal for a normal person. Anything under 100 in Cancerland is considered "okay" and he's hovering in the high 99s now.)

But I'm okay with that. It means the antibiotics are working (his line area already looks much better) and it means that something is working inside....grow, cells, grow!


  1. I'm so glad Sam enjoyed his book and drawing! Sam sounds like a great person and it sounds like he has some funny jokes to share--I need to get a copy of that joke book! Best wishes to Sam and his family!

  2. How incredibly cool to get your favorite book sent to you directly from the author! Prayers to Sam as always, and to Janet Johnson and all those hurting in Boston.

  3. Go Sam, go! Hope you got lots of laps in today (and that other "counts" were high as well!). Love your Team Awesome t-shirt (ok, I DID give it to you but I DO really like it!) Thinking about you.
    Love, Julie and Sam (the dog)