Tuesday, June 11, 2013


The first time they sent us home from the hospital, last July, we were petrified. They were sending us home with this kid who had not seen the outside world in almost a month, with these central line lumens dangling from his chest, and with the knowledge that his immune system was fragile at best. We had instructions for how to flush his lines, and they armed us with the HOT unit phone number and a short list of Things To Watch For.

"Have fun!" they said cheerfully as they tried to push us out the door.

"Wait a minute!" I said.

I dragged one of the nurse practitioners into our room and I asked her a series of questions, with both Michael and I hanging on every answer:
Can he go out to eat? (yes)
Can he go to the park? (yes)
Can he go to the movies? (yes, if it's not a very busy first-day-the-movie-is-just-released kind of theater)
Can he ride his bike? (yes)
Can he go swimming? (no. I threw that one in even though I knew the answer.)
Can he go to visit camp? (yes)

We were relatively surprised by the answers, but we just took a lot of deep breaths and plunged in.

When they released Sam this time, I didn't run through the list. (We have done this before.) But I did mention something about staying home to one of the nurse practitioners and she said, "We don't want you to seclude yourselves at home. He can go out, just be careful."

Ah...."be careful." Never before have those words been so open to interpretation.

I knew bringing Sam home this weekend that his ANC was under 200. But frankly, I still don't know what it is. We know it's Low. He has, in essence, almost no immune system.

On Saturday, we went out.
To lunch.
To a park.
To the library.

I kept looking over my shoulder, nervously worried that we might run into one of our oncologists....who happen to live in the neighborhood. What would I say? Would they scold me? We washed our hands a lot. Maybe they would catch us in that act and forgive me.

And then today, we went to clinic for Sam's chemo and checkup. Dr K came in and said, "how's it going? I expected to see you around town!" So much for my worries about getting caught!

Updates from Hotel Maison de Casa House:

The proprietors have been lovely and accommodating. They both cook and clean up. Amazing!
 The menu is varied unless you're Sam. Then you get mac and cheese for as many meals as you want.
We might have even gone out for frozen yogurt.
I might have looked over my shoulder a few times....
I am now a skilled deliverer of IV medicine for Sam. This is the coolest thing. It has a little vacuum bubble inside, and once activated it pushes the medicine into Sam at the proper rate over the period of an hour. And he just walks around with it. He could put it in his pocket and go out for frozen yogurt. If one thought that was a good idea. (It's a little like nursing a baby. We haven't yet started doing it in public.) I guarantee you that when we go back in-patient Sam is going to request this method of medicine-giving in lieu of the big ol' pole. (It's not really an option.)
I swapped one grandchild for another and David accompanied Sam to his chemo and clinic visit today.
 Sam never fails to find a way to be silly with the mask or other medical implements.
Photo credit: Karen
And that's where we are. We have another visit to the clinic to check in on Friday and a bone marrow aspirate and biopsy scheduled for next Tuesday. There's nothing to do except wait...and wonder...and hope and pray that this new regimen is the right one...so in the meantime we'll try to enjoy the outdoors and the parks and the library and even some trips to eat out and....it's all okay.


  1. Two mantras for this time of life: "It's all ok" and "I've got this", sez G-d.

  2. Hooray for grandparents.

    Thinking of y'all.

  3. You are the amazingest, go-with-the-flow folks I know. Always holding you close and sending lots of xoxo from NYC.