Sunday, September 8, 2013

Twisty Ride - BMT +12

It wasn't the best day.
Sam's continued fevers bought him a CT scan this morning. His extended neutropenia leaves him open to all sorts of infections, but in particular, they are worried about fungal infections in the lungs and/or sinus cavities. Remember, he's been on an anti-fungal medicine every day since he was released from the hospital in June, and he's basically been neutropenic (low counts) since then.

The scans came back mostly normal, with  just one tiny spot that may or may not be a problem...and the continued fevers with no other obvious cause suggested that some broader anti-fungal coverage might be in order.

Well, it turns out that Sam is allergic to the anti-fungal drug they gave him. He reacted with some tightness of breath and discomfort -- so they quickly stopped the drug, which helped him right away.

If the first drug was Pepsi, we moved onto Coca-Cola. But apparently, Sam doesn't like Coke any more than Pepsi, since he responded pretty badly to that one too. (This time, there were rigors (shaking) and a super-high fever, as well as a lot of vomiting, even though there's nothing in his stomach.)

So...I think we're going to look for a Plan B in terms of anti-fungal coverage. We'll stick with the original medicine, and tomorrow I'm sure there will be a discussion of what to do next. Luckily, they always seem to have a plan C...D...E...

Scary? Doesn't even begin to describe it. 
Before all of this, the doctor told me to "buckle my seatbelt."
Have I mentioned that I hate roller coasters? I get carsick with the least twisty-turny road.
We're good at looking at the upside of every day, and its been rare to have days like this one for Sam, where he's really quite sick and uncomfortable all day. I'm was hard, no question. He's still pretty miserable and it is hard to watch him like this. Even SpongeBob couldn't perk him up or the chance to kick my butt in Monopoly.

On the upside, his white blood count went up to .3 -- so that's something to cheer about. So even though he feels like a garbage truck ran over him, his cells are doing their thing...

Here's hoping that Monday morning brings a perkier Sam.


  1. Sam, you're in my prayers. Your mom says that today has been especially tough, and I'm sorry to hear that.

    May your doctors be wise, your nurses gentle, and may you know in your heart that there are many of us who care about you who have not even met you. May tomorrow be easier.

  2. As they say, a picture says a thousand words. My heart hurts to see the picture of little Sam suffering so. What can one do for a loved one that is sick but continue to support, love and take care of that person. You are the best mom, Phyllis and Michael is the best Dad. Please give Sammy a hug and kiss on the keppy for me. I cannot express well enough the sadness and hope that I feel for all of you. With love, Rose Pike

  3. How discouraging! We think of you constantly and send you our prayers and love!

  4. thinking of you all. i hope tomorrow will be better. xoxo

  5. G-d willing
    Bumpy ride for all according to the map. Keep the goal in sight, refuah shleimah.

  6. I'm sorry today was so hard, Sammy. I hope that tomorrow will be so much easier for you and for your mom and dad who love you so much.
    I'm praying for that right now.

  7. Oy...what a bummer of a day. The .3 is encouraging, but the rest of it really stinks. Praying you have smoother sailing tomorrow, and the day after that, and all the days after that too. xoxo

  8. Refuah Shleimah to Sam. Hope things improve ASAP.

  9. We are thinking of you. We are hoping for a better day today. We are also hoping Sam finds food that meshes well with his new taste buds.

  10. Bumpy roads is what it's all about. We are praying daily for Sam and your family. This new year will be much better.
    Love, Adrienne and Kenny