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.