Sunday, June 17, 2012

Checklists and PomPoms: Chemo Day 4

I need a set of pompoms.
Don't take that literally, please.

But I seriously felt like a cheerleader today.

Sam needs a lot of cajoling and bribing, a lot of convincing.
He is angry at being in the hospital.
He is angry that he has to have an IV pole to drag around.
He is angry that he has to have his bodily functions analyzed.
He is angry that we want him to move around and do things.
He is angry that he isn't home.
He is angry that he has cancer.

And dammit, so am I.

But my job is to make sure that stuff happens in the hospital, no matter how ticked off I am at how unfair and stupid and SUCKY this all is. (Yep, I've got high-level vocabulary to talk about leukemia.)
(And thank GOD for the nurses - they are amazing. They tease and cajole and flirt and help and push and act silly and help so much.)
So here was today's checklist, created in team with our nurse:
 So we walked, a little bit outside. Sam hates the IV pole, did I mention that? One of the nurses asked him if he had named it, since some patients do. "I am not friends with the pole. I will not name it," he said. (I keep trying to come up with names. I like Oscar, as in Oscar the Grouchy Pole. I also like names that start with "p" like Poopy the Pole. Sam is not amused by my own self-amusement.)

And then there was the visit. The Gerstein boys and their parents came to visit Sam, and he lit up at the sight of these boys who have been his favorite "big" friends for so long. He hopped up and gave them a tour of the floor (check off "walk"!) and he played Uno and put a Lego together with them. He even ate a bag of french fries while they were here.
In case you're looking closely at this picture, Will is only wearing a mask because he thought it was fun and cool, not because we need those kind of precautions yet in our room. Whew.
They left with a promise of another visit in the future. And even though Sam is relatively frustrated that there is a future in the hospital, that makes it seem a little more bright.

Uncle Josh is spending the night with Sam. They've already worked out a system for dealing with the late night wakeups. And taken two walks. (check! check!) Before I left, I wrote out tomorrow's checklist. I snuck in an extra "walk" box just for kicks. A cheerleader never gives up, right?


  1. Good thing that you mentioned that you were kidding about the pompoms because I could TOTALLY see the hospital being bombarded by them in the next few days.

    Get some rest. We can't have a tired Head Cheerleader.

  2. Sam, Ms. Ellingson here. Macey told me again that she'd like to hang out with your tortugas and ranas. I keep trying to tell her to wait, but she's impatient to see you. Tell an adult if it's ok that she comes (and that I drop her off!). Love, Ms. Ellingson

  3. Seriously, let's hear it for the nurses - right?

    Maybe there is a superhero equivalent for Rambo? That's how one of my nurses thinks of chemo drugs and the pole on which they are hung. I wasn't into images of battles and war, but man she sure was and it always made me smile. I haven't yet met an oncology or BMT nurse who doesn't actively and passionately hate cancer, and Mary liked to imagine herself delivering the 'big guns' and hanging them on my pole. The pole is, indeed, a pain in the ass, but at the same time so helpful for getting the job done. Doesn't mean Sam has to like it, of course. Does he get to be unhooked for showers? I MIGHT have had a few two-shower-days for no other reason than that.

    Oh - and the mouth washing/rinsing? SOOOOO important. I got through with only one mouth sore (until the BMT, but that was another story) and those things add considerably to the suckiness. To be avoided if at all possible. I got the one I got after getting a little lazy and boy did I regret it.

    I can work on thinking up a better cheer to cheer YOU on, Phyllis, but in the meantime, just Go You. :)

    Hey Sam! Okay, so the pole isn't your friend, but could it be your frenemy? You don't like it, you don't want it around, but it is grudgingly useful for carrying around stuff so you can play with legos, eat french fries, hang out with friends . . . you know, things like that? My pole sure wasn't my friend, either - and no way was I going to name it. I'll name just about anything else . . . bugs, even, when I catch them and let them go outside . . . but I never did name my pole. When I went for walks in the hospital, I often asked whoever was walking with me to push the pole for me. Same time, though, I HAD leukemia (AML, just like you) and now I don't and, as hard as it is to admit it, that stupid, annoying pole helped make that happen.

    You are doing a great job, Sam, and I think you have the best - and maybe the biggest - superhero team ever. (And my superhero team is pretty awesome, so that's saying something! :))

    Please give that mom of yours a big hug for me and if you want tell your nurses that your mom's friend and your fan Amy thinks they totally rock.

    Lots of love.

  4. I think of the pole and chemo like the game pac-man. The chemo is the large pac-man gobbling up the bad stuff and getting rid of it for good.

  5. Sammy, I love you. Sooo much. You are so strong and this won't faze you. You are so loved by so many people everywhere. Its hard to explain the feeling of sadness I have for this experience that you have been forcefully thrown into...
    (Also, you could name the pole even if you're mad at it, so that you'll have a name to say when you tell it you don't like it.)
    You are definitely my superhero Sammy, great job. :)
    I miss you

  6. Gotta say Sammy, your relationship with the IV pole reminds me of Green Eggs and Ham when Sam (go figure you star in this book) says I do not like green eggs and ham, I do not like it Sam I am. You are such a superhero though Sammy, and I am in awe of your strength and bravery in this time. I know I was not nearly this brave when I had to be in the hospital as a kid. Keep it up! I'll write you letters or postcards and maybe you can practice your writing and write back when you feel like it! I'd love to put them on my desk at work and be able to say Sammy wrote that to me, he's a superhero!

  7. Perhaps it would help if the pole was dressed up as something amusing? A giraffe? A tree? Cover it with polka dots?

  8. Sam, I have never met you before, but I know your Uncle Tzvi from our time as classmates in Israel, and so I know that you come from a family of amazing, funny, and caring people. I am totally on your team, Sam! Sending love and strength from Brooklyn, NY. - Nikki/Nechama