Monday, May 6, 2013

Beginning Again {Day 1}

We slid back into hospital life.
As though we'd never left.

It's much easier to come back to the hospital with the line already placed, with some expectations already there. It's so ridiculous that I say things like "it's easier to come back to the hospital" -- as though this is just a normal event in our lives.
Waiting in clinic to be sent upstairs. Love the face.
We were whisked up to our room quickly, but then we did a lot of hurry-up-and-wait. It didn't bother Sam much, except that it took a little while to get him in the computer which delayed his first hamburger order.
Testing out his new magnetic dart board courtesy of Asher and family (thanks!)
This protocol is not one that is regularly run, so it had to be manually entered into the computer. They knew we were coming but they were double-checking to make sure it was all ready.

There are five main drugs involved in this protocol. One of them, topotecan, will be very slowly infused over 120 hours. Yes, you read that right. He will get a continuous chemo drip. While this is new to us, it is not new to our nurses -- which is always very comforting to me. I like to know that they've done this before. Another drug only needed 6 minutes! There are a lot of moving parts to this protocol and I am very grateful for the computers and such that keep careful track for our nurses and doctors.
So far, we've been in the hospital for about 8 hours. Sam has eaten 3 hamburgers, done 20 laps, watched a bit of television, and played a weird and silly form of charades which is really just act-something-out-and-make-mom-guess-what-it-is. There haven't been any noticeable side effects...yet. We've had visits from doctors and nurses. I love their vigilance. It helps me to sleep better at night. And considering how little I slept last night...I'm looking forward to those regular vitals checks to help me sleep better. It sounds so backwards, perhaps, but the comfort that it brings me....let's just say I'll rest easier knowing that they're watching him. At home, the slow creep of the leukemia cells just kept me awake.

We're back in room E583. We did the fourth round of chemo in this room. It was, in that strange way, a happy round of chemo. Sam had almost no major side effects. It was the final round. The one that sent us on our merry way...what we hoped for...the goodbye to the HOT Unit and the road to the bell-ringing. It's a nice room with a sunny eastern view and a big bathroom. (These are the criteria, by the way, for a "good" room.)
As I type this, Sam is contentedly drawing. The IV pump is humming away. The sky is blue and streaked with clouds and I can tell that the sun is getting ready to set. It's peaceful and calm.

I'll just keep hoping that it stays that way.


  1. I love his smile in this last picture. On the iPad with food in his hand. I hope he is able to keep on's so infectious!!!
    Lots of love always,
    Auntie Liz

  2. I am glad that Sam is still able to keep active even with his medications killing off his bad cells.
    Keep those burgers coming!

  3. Sending thoughts and prayers from Upstate New York! We hope this protocol Beats the Beast and know Super Sam CANCERVIVE! You are so lucky to have so many family, friends and admirerers sending positive thoughts your way!

  4. Let this be your good luck room, successful treatment and refuah shleimah

  5. May Sam have Refuah Shlemah! If he does the app Draw Free, we have a happy 10 year old here
    in Arizona, who has followed his story, who would be happy to play! Let us know his username.

  6. I can see Sam's great energy in all of those pictures. We are all thinking of Sam over here and rooting for the powerful Superman!

  7. Hey, Sam, did you know that I danced with you at your bris? You were kind of out of it then, but here's a promise -- we're going to do the craziest dance EVER to celebrate when you leave cancer land behind for good! And I'll show you how to do amazing Martian impressions to surprise your dad. Cuz I bet he loves a good Martian impression.

  8. Thinking of y'all. I'm glad there is some blessing in the vigilance of doctors and nurses, and in being in a good room, a familiar room. May this round of treatment go as smoothly and comfortably as can be.