Wednesday, June 5, 2013

Ruling Out

Well, it all seems somewhat right that we're here in the hospital. Sam keeps spiking fevers (mostly at night) and so the doctors are glad to keep him on antifungal and antibiotic drugs.

In addition, this extended period of neutropenia (translation: long time with low counts) leads them to be concerned about the cause of these fevers. Since all of the cultures have come back negative, we are pretty sure it's not a blood infection. So today they did a CT scan to rule out....anything. I'm quite a fan of "ruling out" bad things, and the CT scan wasn't too stressful for Sam at all. The only really stressful part was waiting for the results, which, thankfully, were clean. (As I said to one of the doctors today, I'm quite glad that someone was able to "look inside" of him today.)
Can you see Sam's bright green Crocs?
Despite the fevers, Sam started the new chemo yesterday and continued today. He didn't have any immediate reactions, which is good, and aside from some nausea and other intestinal discomfort, he's doing alright.
We're hoping for a couple of fever-free nights (and days, of course) and perhaps we can consider doing a little outpatient time, probably closer to the hospital than to home. I must admit that there's a certain comfort in being in the hospital. Having someone monitoring Sam pretty much all the time makes me feel safe and secure that we would catch any problems quickly. Unlike kids who do most of their treatment outpatient, Sam has had an already-long period of neutropenia (low counts), which can create more possibility of danger. So while the treatment is usually done outpatient, the patient doesn't always start out as low as Sam did. This is all a very convoluted way of explaining that I don't know what's going to happen next. I do know that I plan to be comfortable with the decisions that we make with the doctors, and I do know that we plan to make those decisions together...and I so appreciate that they listen to and respect our concerns.

Aside from all of the medical stuff, Sam is doing well. Aside from some nausea, he's eating and drinking and moving. Not a ton of laps, but plenty of activity nevertheless. There's been a lot of large-scale art creations going on in our room, and we've watched quite a few movies. And of course, the yellow sea creature has been present in our lives.
Why yes, that IS a butterfly net that Bubbie thought Sam would enjoy. There weren't any butterflies to catch. But that didn't stop our hero!
Eating his mama's famous Chemo Mac and Cheese
Sammy and Sammie enjoying the Healing Garden today!
I know that many of you enjoyed our recommendation of Z is for Moose, and so here's another one. Today Sam got a package from David Biedrzycki, an artist and author. His son, Al, is a friend of our friend Tess! (I love all the connections in our world...) David has written and illustrated a number of books about bugs and dragons -- can you imagine how much fun Sam had with today's package?

(This package actually arrived today during Sam's chemo, when he was really crabby about having to be hooked up to not only his pole but also the pulse-ox machine for the whole time. Distraction welcomed!)

This was one of our favorites in the stack:
Thank you to David and Al (and Tess) and to everyone who has ever sent Sam a package or an email or a card or a note or whatever. It brings such light and joy into each day, and it gives us all such a life. Thank you thank you thank you.


  1. Your story popped up via a friend's facebook feed last summer. I just wanted Sam to know he is in our thoughts and prayers. He is a brave little boy!

  2. Sam is a lovely and brave boy dealing with something no child should have to go through. To Sam: Please get out of the hospital soon and my family and I wish you a speedy recovery. I got to this blog after googling "What is Leukemia?" for a school project. I was reading your blog when the best thought came to me...I should do my project about you! What a brave little man!

    Get better soon, Sammy and שתרגיש טוב יותר! (Feel better soon!) XXOO
    Love Z.

  3. such a trial, may you all stay healthy