Tuesday, September 10, 2013

Body and Soul - BMT +14

So you know how we usually write posts about how crazy low Sam's numbers are and how amazing he feels? He's usually the kid with the low ANC running around leaving us all bewildered. 

So it seems that things are a bit topsy-turvy over here in BMT-land. Sam has incredible numbers. White blood cells and platelets abound. He's a crazy rockstar and his docs are thrilled. (WBC .7, platelets of 132 -- I know, right?!)

He feels like a big ol' crummy mess. Still running fevers, still nauseous, still just not Sam. 

And our doctors get it too. 

Let's go back a step. 

Many of you have asked me about the fungus stuff. For the record, Sam does not have a visible fungal infection. But with a continued period of neutropenia, he is always at risk for one. Any unexplained fever has the potential to be a fungal infection (amongst other things) and so our doctors act accordingly. As you know, Sam is allergic to one med and has a pretty strong reaction (not considered an allergy) to the second. So there's a third. Last night they administered that drug, and its side effect was terribly scary hallucinations. So for now -- he remains only on the original prophylactic anti-fungal drug (which we like more and more!) that he's been on for months. If he shows a sign of a true fungal infection, they will make the choice of which drug to give him. Aside from the bad drug options for Sam, a fungal infection would just be BAD. So if you're looking for a specific focus for your prayers -- this would be a good spot. 

Sam's negative reaction to last night's drug made us somewhat desperate for a good day. But he spiked a fever this morning and the decision was made to administer steroids again. It's still not clear what is causing this but it is possibly Graft vs Host Disease (which we want a little bit) or, as Dr M says, it could still just be "cells talking to each other."

I wish they would just simmer down and get to making their new home nice and cozy. Hush, little cells....it's gonna be alright. 

Ok, so you've got all that?
Even in the midst of it all, we had a long talk with our docs today about how wonderfully Sam is doing. So in the spirit of "aim high" I used their happiness as an opening to ask to have his PICC line removed. It hasn't been used much and it really annoys him to have the line in his arm. The dressing change yesterday was particularly traumatic. And guess what? No more PICC! Part of that decision was medical -- any open line is always a potential source for an infection to get in. But part of it was emotional. We are trying so hard to keep Sam happy and focused. Hopefully this will help him feel like he's making the great progress that the docs see. 

And then this happened: 
Three rabbis and a doctor walk into a room. No joke....

Here are two guys who are dedicated to raising Sam's spirits. Body and soul, baby. They had a shofar-down over Sam's bed and got him to smile, giggle, and even throw down a few taunts. Yes, Dr M actually blew the shofar in Sam's room. Yes, Michael and I nearly fell over laughing. And yes, it raised everyone's spirits. 

So where are we?
In the roller coaster of this, we are somewhere between high and low. Trying to put it all together to make a healthy, happy Sam. Day by day, hour by hour, minute by minute....


  1. Shofar, sho good. Tomorrow, sho much better (I hope). Keep fighting little man....you're a mighty warrior.
    The Kalman Family

  2. Keeping your family in my thoughts and prayers.