Thursday, August 29, 2013

And So It Goes - Day +2

Sam spent most of today in a good mood.
Which is great, considering that today he also expressed that he was in pain in his throat and back.

We are constantly being remind that this is "to be expected." The high doses of radiation and chemo that Sam received this time around were even higher and more toxic than any he has received before. They are completely prepared for mucositis, which is an inflammation of the mucous membranes that line the digestive tract (from top to bottom...). Sam suffered from this in his very first round of chemo last year but has never really experienced this side effect since then. The pain can be quite intense, we're told, and he was feeling it. They put him on a morphine drip and the basal rate can be supplemented with a button that he can press when he feels a need for it (known as PCA, or patient-controlled analgesia). He understands how it works and I think he likes the control. And it seems to be working well. His pain was very well managed today. (Whew.)

It's a little bit heartbreaking to watch this, since we've been so lucky and carefree during most of the other treatments. I was hoping that the doctors would be wrong about this part. After all, they've been wrong before about how Sam would respond to treatment.

The doctors are, however, really pleased with him. He required blood and platelets today, which again, is to be expected. His own marrow won't start to work to make red or white blood cells for a long time. We've been told 10-20 days for engraftment, for the new marrow to finish unpacking and measuring for curtains and switching over its mailing address and figuring out where the bathrooms are and repainting the dining room and just move in already! (Sam can't leave the hospital until we have full engraftment...along with, I'm sure, some other criteria.)

In the meantime, we wait and reallyreallyreally hope that no viruses (or bacteria, but viruses are particularly bad) find their way into Sam's vicinity. Many of you have asked about how we're handling visitation and how they are letting us have visitors and how it all works. At CHW they walk the fine line of balancing patient spirits with health concerns. They know that visitors bring joy ("more joy than germs" we were told at the beginning) and that is important -- hugely so -- to Sam's well-being. I do believe, also, that they trust us to make good choices on Sam's behalf. We are being incredibly careful with who visits and how those visitors are screened. We all shower and change our clothes before going over there, especially after school. We are currently limiting Solly's visits, since he's probably being exposed to stuff at his preschool. David is the one that Sam adores and so far, he has been great about it...I'm so proud of him.
Teaching Sam how to use the Rainbow Loom that came today! (Of course, also playing iPad games)
So that's where we are. We have very little to which we can compare this experience, and we trust our doctors to tell us that we are on the right track. So far, so good. Today one of the doctors told me that Sam was "not the sickest kid on the floor" and that makes me grateful and glad and comforted (and of course, sad for those sicker kids).  

Sam continues to be proud of his Marrow Day date -- his new birthday. He mentions it when people ask and he loves that other people share the importance of August 27th with him. He has told me of nurses with that birthday, of friends with that anniversary, and how special it is to now have two birthdays. The staff made this sign for him (they do this for all the kids, isn't it sweet?) and he likes to point it out to people, since it's hanging in his room.
And that's where we are. There's a lot of maintenance of Sam's health as we wait, and that's the task right we continue to take it one hour to the next, one day to the next...
If you're new around here, don't be worried when you don't see posts from us tomorrow night. We don't post on Shabbat (Friday night to Saturday night) so you'll probably see a catch-up post on Saturday night.


  1. The marrow's first shabbat! Another shehecheyanu!
    Shabbat shalom <3

  2. Shabbat Shalom! I know that you won't recognize the name, but I am Rebecca Froebe's sister. We have a cousin who works for Zynga and he is trying to put together a little something for Sam. He was wondering what games he's playing right now so that if he's able to get things together he can be sure that he sends something Sam will love. Any help would be wonderful!


  3. We love you and are thinking about you all the time... especially through the Shabbat no-post zone!!! Go Super Sam Go!
    Asher, Ethan, Kristin and Alex