Saturday, September 21, 2013

Itchy - BMT +25

Sam had a great day on Friday, working on pill-swallowing and even "poked his nose" outside (okay, he took that literally thanks to Karen and didn't actually set foot outside!)

Check out the Incredible Shrinking Pole....
Actually, since I took this picture, the TPN has gone away as well. So it's just a bag of regular fluids hanging in place of that yellow stuff, which looks gross but is actually TPN, Total Patient Nutrition, which is a true lifeline around here.

He's had a small itchy rash around his neck, which they actually thought might be attributed to the aftereffects of the chemotherapy drug Thiotepa. That's the drug that required the scads of baths that Sam took way back at the beginning of this party. Even though we're a few weeks out, that is when those side effects can sometimes manifest. But unfortunately, the rashes spread around him a bit and then he spiked a small fever. What could this be? (It is less likely now that it's a Thiotepa rash.)

Well, one of the things that has departed from Sam's pole (at about 8pm on Friday night) is a drip of cyclosporine, an immune-suppressant that is, in essence, an anti-rejection drug. Starting last night, he switched to an oral form of this drug, known as Tacro or Prograf. Once he spiked the fever, they started to think that this might be a mild beginning of Graft vs. Host Disease (GVHD), and they started him on a steroid.

But the truth is, they just don't know YET. They will hopefully know more tomorrow, when we can test his Tacro level and see how it compares to where it's supposed to be. It's a bit of an art, making sure that his levels are appropriate to keep the GVHD from rearing its ugly head.


If you'll recall, one day I answered a bunch of questions about BMT and here's what I said back then:
By taking Sam to transplant with a significant leukemia load, we are actually hoping for graft-vs-host disease -- we want the graft (the new marrow) and the host (Sam) to have a little fight. We hope that the secondary front of this war will be graft-vs-leukemia -- we want the graft (new marrow) to fight the leukemia (ninja) hard. The slight mismatch (antigen A) between Sam and SuperMensch will encourage this even further.
So...maybe this is good. And maybe it isn't. And maybe it is the right time for it and maybe it isn't. And maybe it really isn't GVHD at all. And maybe it is.

And now you can see why I'm feeling just a little bit crazy today.
Because I hate not knowing the answers.

Sam is feeling just okay. He is a little uncomfortable (itchy rash!) and just feeling a little under the weather (fever). I'm hoping that the steroids they put him on will not only help with the itching and the rash (and the fever) but also give his appetite a little bump. Gotta look on the bright side, right? And even with the yucky feeling, he still managed to play chess and monopoly and learn a new page of Hebrew and even take a little walk around the unit...that's Sam for you!

In case you're interested, here is a picture of Sam's med schedule for today and tomorrow...
Yes, he ate a 1 oz. bag of Pirate Booty! Woohoo!
And that doesn't even count the IV meds that he's still on! We spend a lot of our time taking pills. I've discovered that the best way for Sam to take his meds is standing up, in the bathroom. It separates the pill-taking from the puke bucket and standing somehow makes it easier. The other key element? Distraction. Just as Sam picks up his water cup and pill, I start to tell a story. I'm currently telling some of my favorite stories in installments. I only have to talk from the time he picks up the water until he's swallowed the pill and maybe just a few more moments as he makes sure it stays down. So I try to stop telling the story right then so I have more of it to tell in the next installment! Even Sam's nurse got into it today, she wanted to hear the next bit of the story. Sam has already asked for some of his favorites, and luckily when Uncle Harry is here tomorrow, he's armed with The Ruby Story (thanks, Jerry!) that he will tell for the morning meds. (Let me clarify -- Sam has the pill-swallowing thing down pat. It's the pill-not-throwing-up that is the problem. Nausea is still a big issue and so we've separated out all the pills  and clustered them around the anti-nausea meds (also pills!) hoping to keep them in his tummy. It's working!)

So here's hoping for a few answers tomorrow and maybe a perkier day for Sam.


  1. G-d willing, when Sam's an old man, or at least a father himself, he'll read these posts to his kids.

  2. Oh boy! How do you maintain your humor. Sam needs to learn his Hebrew from that great book Alef is for Alien!
    Love to you all.