Tuesday, May 28, 2013

In the Wilderness {day 23}

I'm standing right outside Sam's door, talking to one of the doctors today.
Sam comes racing by.
"Mom! My spider is sick! I need a mask so I can operate!"
He holds the spider up:
"His counts are rising but his platelets are only 2 and he needs blood!"
And so he proceeded to operate....
(At one point he came out to where we were standing and said, "I don't think he made it. He died." And of course, I was already into rabbi-grief-counselor mode. "Oh, honey, that's so sad," I said. The doctor, however, had a different response: "No way! Go back and revive him!" And then Sam came back and said, "He was just sleeping without breathing. He's better now.")

Perhaps this is a sign he's been in the hospital too long.
Or maybe the fact that he made his own plates out of staples and paper...
Or that he ate pizza for breakfast. (Or wait, does that mean that he's getting ready for college?)
Or that we've been here long enough that the nice people who bring the stuffy-animal gig remembered him....
Or that a really quick visit from a friend was a nice distraction...
No matter how you cut it....it's been a long time. It's starting to wear on Sam. He's not really being mean or angry, he's just overly silly and feisty and cantankerous. He isn't interested in walking laps or much else. He spent a LOT of time today using a stapler (oy, thank goodness he got platelets today) and creating large scale art installations. Packages were a great distraction, but our little patient is way less patient with everything and everyone. Sigh.

Which brings me to the question that I know is on your mind....how long are we going to be here?

Sam is on this medicine:
I'm sure I'm breaking any number of hospital rules by posting this.
It stimulates bone marrow growth, and helps to increase counts quickly. Sam's never been on this drug before, but it's part of this new protocol. So yesterday Sam had an ANC of 72 and today it was up to 95. Woo hoo!

But there's more. The sample today showed blasts. What does this mean? Well, frankly, we don't know. The doctors looked at the sample and agreed that there are immature cells present. Are those immature cells leukemia? They don't know yet. This medicine that got his counts going so quickly can also cause the body to "throw off" cells at all stages of the cell-life-cycle and so these might just be little baby healthy cells. Or they might not.

The only way to tell for certain is with a bone marrow biopsy, which is now scheduled for later this week. I don't know yet when we'll go home but we're hoping that it is soon after the biopsy. It is much earlier than we ever imagined we might go home on this protocol, but the uncertainty of today's lab results casts a wide shadow over the usually exciting experience of "rising counts."

I asked one of the doctors if now was the time to panic.
He said no, no panicking yet....just worrying.

Trust me, I replied, worrying is already on my agenda.

So the results are worrisome but inconclusive. Hopefully we'll have a conclusive answer soon, maybe even before Shabbat. We're in new and unfamiliar territory, and frankly, I don't much like it here. I prefer the nice cozy woods we were in before. Now I feel like we're out in the middle of the wilderness, wandering and afraid. But as I type this, I know that I only need to scroll back to the top of this post to see my Sam, in all his sparky and snarky glory, doing surgery with chopsticks on a rubber spider...and I know that our wandering in the wilderness is not done alone....he leads and lights the way.


  1. Keep going, no choice.
    refuah shleimah

  2. sending love and healing prayers - every day.

  3. More daily hugs and prayers coming your way from this corner. Following closely - there are a great many of us close by as you wander...

  4. There is an alternate reading for Emet in Mishkan T'filah that concludes:
    "There is no way to get from here to there
    except by joining hands, marching
    Allow us to join hands with you all and march together!

  5. We are, as always, cheering you on, leading the charge as Sam's Nebraska Fan Club! We, too, will be happy, make that honored, to join our hands with yours. Sending you good vibes from the Great Plains-

    Jane Rips

  6. Sam,

    I have stitched up stuffed animals before but never operated on a spider with chop sticks. You can teach me this technique the next time you are in. I can be your surgical assistant.

    Keep on charging forward!!!

    Dr. Matt

  7. Sending you my love, Sommers Family. xxxooo

  8. In last week's parsha, which my Sam read for his Bar Mitzvah, the Jews were still wandering (and eating lots of meat). We hope you and your Sam find your way out of this wilderness and into the promised land VERY soon! R'fuah Shlema from Arizona.

  9. I love the story about him doing surgery on his spider with chopsticks. (And you being in rabbi/ grief-counselor mode -- oy, I get that.)

    May this wilderness sojourn be brief and manageable; may the news be better than you fear.

  10. Lots of love from the Hubbard family in Virginia! Prayers of healing and strength too!!!

  11. I'll pray for Sammy again, as I do every day. that little creature needs to get rid of all hospitals and medications, he heeds to go home, he needs to be healthy again, he needs to go to school with the other kids.
    I don't know why bad things happen to good people. I'm looking for the answer; I didn't find it yet. Maybe I will.

  12. Love and prayers for a Refuah Shlema from the Macon family in Texas. We are thinking of you often Sam!

  13. Dear Sam,

    I can't believe it! You are the only kid in the whole wide world who knows how to operate on a spider! And, with chopsticks. That's amazing! I wish that I knew how to do that. Even though we've never met, you sure sound like an incredible boy. Your family must be so proud of you.

    I send you my love all the way from California. When we meet one day, maybe you can teach me how to operate on a spider.

    Michael Levison (I went to Camp Mohawk with your daddy and uncle) and family