Thursday, October 17, 2013

PICC-Me-Up - BMT +51

After yesterday's Feel-Better Day, I hoped that today would be Feel-Even-Better Day:

It didn't really start out that way. I'm sure you've noticed by now that anesthesia is not Sam's strong suit. I don't know if I've fully done justice to how miserable the whole experience is for him -- from the pre-procedure anxiety to the waking up in a terrible state, it usually isn't good. I had high hopes for today's procedure, though, since he doesn't need to be put fully to sleep. But it seems that the more times we give him these sedation drugs (today he had ketamine and versed), the less happy he seems with them. Dr. M has actually given Sam's case over to an anesthesiologist to do a little detective work and see how we can make these sedations easier for him -- since we aren't exactly done with the whole thing. They want to check his marrow pretty regularly but it's hard to do if the sedation is such a stressful thing.

Anyway, we waited about an hour and a half after the original time for the PICC line placement, which is done in a department called Interventional Radiology. The folks down there remembered Sam from his first PICC, when he was a rockstar. Today he had a much harder time with it. (I don't get to stay in the room.)

But finally it was done, and he slept off the afternoon. When he finally woke up, he watched Gene Wilder (a local Milwaukee kid!) in Willy Wonka and the Chocolate Factory (which we found out is Dr. M's favorite movie, who knew?) and compared it to yesterday's viewing of Charlie and the Chocolate Factory (the newer one with Johnny Depp). Sam liked them both, which is very diplomatic of him.

He's still feeling a little sluggish but he asked for pencil and paper in order to start working on his birthday wish list. It actually has an interesting mix of attainable and totally ridiculous things. (For example, there will not be another turtle coming to live in my house.) To know that this birthday will, God willing, be followed by many more might forgive me if this simple activity caused a little bit of mama-tears.

So it wasn't exactly the "best" day, but it got much better after about 4:00pm. I think that home-going is on the horizon very very soon. (I don't want to jinx it so I'm not even going to say when I think it will be.) Thank goodness, because Sam is desperate for a Sunset/Michaels/LouMalnatis/CurryHut fix, not to mention his own house and his siblings and his dad.

Today we also got some belated good news. When they did Sam's biopsy a few weeks ago, the one that came out with zero leukemia, they also sent a test called a "chimerism." They want to know what percentage of his blood, marrow, and T-cells are Sam and what percentage are SuperMensch. The results have apparently been there for a while but since we were so caught up in the "remission" result, they were never communicated to us. I knew if there was a problem, we'd have heard by now. So let me tell you straight up: Sam's blood, marrow and T-cells are 100% SuperMensch! This is an excellent result, it doesn't get any better than that! So at the end of this relatively crummy week, it was lovely to hear some very positive, affirming news that Sam is truly doing well, that this hospital stay really might just be a speed bump along the way.

There's still a long road ahead of us. Sam continues to have a severely compromised immune system, and we will continue to make very regular visits (twice weekly at least) to the clinic in Milwaukee. But his body is responding well, his results are looking good, and we are all happy! I know that my own optimism will continue to be cautious for quite some time...but for today? I'm feeling relieved and blessed.


  1. i love that last picture.

    we carry him in our hearts too, just like in the ee cummings poem. (i prefer to invoke ee cummings to taylor swift.)

    hugs to all your fam. hope you're sprung soon.

  2. Love that last picture in the post. Did the turtle balloon or Dr. M. take it?!

    And, glad to hear the good news about the blood, marrow and T-cells that Sam and SuperMensch now share!

    xoxo from NYC!
    ~ Jane.

  3. 100% SuperMensch + 100% SuperSam = This is what awesome looks like

  4. Love the last picture and happy to hear the good news! Sam's favorite restaurants are mine too - especially Curry Hut and Lou's!!!

  5. Prayer from here in Shiloh for a refuah shleimah.

  6. Hooray for the blood, marrow, and T-cells being 100% what they're supposed to be!

    And also, hooray for the birthday wish list. <3

    Shabbat shalom to you and yours.