Saturday, June 29, 2013

Holding Breath

I saw a few people this weekend who strongly suggested that I should write a blog post.
Because I haven't lately.

And I spent a lot of time over Shabbat thinking about why I haven't wanted to write a post.

I think it's because I'm simply holding my breath.

I realized that I felt that if I wrote down how well Sam is doing and how well he seems to be feeling and just how....ordinary...our lives are feeling -- that it might all change in a blink.

It still can. Trust me, I know how easily it can all turn in a moment.

But I'll say it:
Sam has been doing well.

His chemotherapy appointment was moved from Tuesday to Wednesday, which was a minor change due to the supply of one of the chemo drugs. Remember, Sam is on a slightly unusual protocol now, so this isn't a drug that they stock normally. So Wednesday it was. His labs on Wednesday suggested that a transfusion of both whole blood and platelets would be warranted before the weekend, so we decided to come back on Thursday to get that over with. Two long days in clinic and we were done for the week! Sam is always begging for a visit to the zoo, and I rewarded his blood day with five minutes visiting the penguins. (The zoo is only about 3 minutes from the hospital, and as soon as we walked into the zoo, the skies opened up in a pouring rain. So he had to be content with literally five minutes and the penguins!)

We're watching for fevers, we're watching for bleeding or bruising, we're watching for anything that might be just off....and it hasn't materialized. But of course, now that I've written all of this -- who knows what is going to happen? Am I superstitious enough to believe that I'm able to jinx his health just by writing it down? Probably not. Should I tie a red string around his wrist? Probably.

It is almost Sunday, and we have to get to Tuesday. On Tuesday we will find out, as the doctors say, that the "truth is in the marrow." Whether or not the chemo has worked in any way, whether his remission status has changed, whether there is any kind of significant change in his leukemia....these will be decided on Tuesday after his bone marrow biopsy. I'm expecting (hoping for?) a short day in clinic, since he's scheduled for a pretty early appointment. We'll still be holding our breath.
We're still hanging out at Hotel Maison de Casa House. Trying to keep everyone occupied and happy, while paying attention to the unique demands of a low ANC and the need to offer regular opportunities for anti-nausea meds and keep the anti-fungal meds as scheduled, plus clinic visits, blood draws, get the idea. It's actually a little tricky to remind the other kids that yes, something is in fact wrong with Sam. Because it all seems so "normal." Sure, he's a little crabbier than usual, and sure, we hover over him a little more than we ever did. For the most part? It's hard to tell the difference between Sam and any other kid at the park. He's even growing back some hair so instead of Baldy, we might call him Fuzzy.
At the Before-the-4th of July Parade -- we stayed far from the madding crowds, though.
Sam and I negotiated the mask for the Butterfly Room -- it just felt too enclosed...
In truth, I feel pretty helpless. There's nothing we can do to avoid a fever or infection (other than keeping him out of large crowds, but most infection risk comes from within him), there's nothing I can do to encourage the chemo to work better. There's nothing we can do to know the answer and there's no way we can plan beyond Tuesday. In fact, I keep declaring that there's a black hole in the calendar after July 2nd. It just doesn't exist as far as I'm concerned. I know the world will keep on spinning, I know that we'll get up on July 3rd and drink coffee and read the newspaper and....yes. I know all of that. But in terms of planning? I can't. I simply can't see past the next step. (And of course, I'm always remembering that no matter how happy we'll be to see Sam into remission, what it means is that we then begin the very long road of bone marrow transplant...)

These lyrics spoke to me this week....perhaps because my standard answer when someone asks me "so how are you doing?" is "I just keep putting one foot in front of the other."

you do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able

you've been here for a long long time
hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it's been a while since i felt this
but it feels like it might be hope

(Sara Groves-- yes, I know she wouldn't usually be in my orbit)

P.S. People have asked about the other kids. They are doing as well as can be expected. David is headed off for six weeks at OSRUI and he can't wait to go. I know that camp is so very good for his heart and soul. Yael is attending day camp at the JCC Rainbow Day Camp in Milwaukee. We feel so blessed to have this opportunity to send her to this camp that both I and my brother attended when we were kids! (Okay, I went to Camp JCC and Harry went to Rainbow Day Camp -- now they're merged!) She is loving the attention, the activity, and the structure (as well as the bus ride!). Solly is...Solly. He just likes to make sure that he gets his chocolate milk, his occasional visits with Dora the Explorer, and has his favorite stuffed monkey. Plus he likes to take stock of where every member of the family is and he would like to wear his pajamas all day.


  1. Superman Sam stays on the Mi Shebeirach list at Temple B'nai Israel in OKC....and your entire family remain in my heart's prayers.

  2. Perhaps whenever you say something good, follow with "poo, poo, poo" Even though I'm not superstitious, when I say them, I always feel "safer!"
    I'm praying you have a good Tuesday.

  3. Thanks for your post. Been looking for it and so relieved to have it. I don't know how you do it at all and we're all grateful for it.
    We'll be praying that Sammy continues feeling well and that Tuesday brings good news.
    Hope is a blessing.


  4. bli eyin haraa
    refuah shleimah
    in G-d's hands

  5. Praying for good results on Tuesday, and all the Tuesdays until he is cured. xoxo

  6. Thinking of you, glad you wrote the post as hard as it might be, glad he is having fun, and refuah shlayma, best wishes to your whole family.

  7. Thank you for the update. I continue to hold all of y'all in my prayers, always, always.

    What you wrote at the end about Solly made me smile, too. Our little guy (who's not so little -- three and a half and sprouting up like a gangly beanstalk!) mostly cares about Dora and staying in his PJs, too. <3

  8. Thanks for this update. I hope all goes well for Sam. Even though we hardly know you, we've been saying Mi Sheberach for Sam all these months and keep you in our thoughts and prayers.
    - Andy Vogel, rabbi, temple Sinai, Brookline MA

  9. Sometimes it is just easier to play ostrich. I totally get that.

    Praying that on Tuesday things really start looking up.

  10. Glad you updated. We don't know each other, but I've been following Sam's story for a long time now and continue to pray for him. I've been holding my own breathe, waiting your update. I hope today went well - know that you've got our prayers no matter what today's news brings.
    Rabbi Rachel Silverman