Tuesday, April 30, 2013

What We Know...

They said there would be 1 or 2 rounds of chemo before transplant.

They said it.
But I didn't believe it. Because he did so well.
"He recovers very well from chemo," said the doctor.
(I'll put that on his resume, okay?)

He did so well with everything...so they had actually started the transplant process. Nothing set in stone. Nothing promised. In fact, I agreed not to hold them to any calendar dates. Just some conversations. A few appointments scheduled.

There was optimism about the results of the first round of chemo, the bone marrow biopsy that was performed on Monday. I asked the doctor, "is this optimism based on a 'good feeling' or on actual science?" His response was that Sam's quickly rebounding counts were worthy of real optimism.

I believe that this was the first time (with us) that they were surprised by results.

Sam is not in remission.

There is still leukemia present in his bone marrow.
Not nearly as much as there was at the beginning of the month.
But enough to require another round of more-intense chemotherapy.
Enough to postpone the transplant, but not indefinitely.
Enough to set in motion some calls to colleagues (theirs, not mine) to collect opinions about what to do next.
Enough to get us back to the hospital sooner rather than later.

We don't have a lot of answers.
In fact, we don't know much at all right now.
We know that Sam will go back into the hospital on Thursday or Friday.
We know that the road will be rough.
We know that we are scared.
We know that Sam is not, and for that we are grateful.
We know there will be laps and hamburgers and multiplication problems and probably way more SpongeBob than any one kid needs.
We know there will be the routine of hospital life and we know there will be new and different challenges.

We know that we will continue to pray and hope and believe and wait and love and breathe and then pray some more.
We know that you will all be with us...and we are thankful.

More to come as we climb this mountain...


  1. Oh Phyllis, your discouragement is to be expected. Yet hold tight to faith (can't believe I'm "lecturing" a rabbi about faith....oh, my chutzpah). I well remember the ups (the glorious ups) & the downs (the heartbreaking, discouraging downs) from my niece's 7 year cancer odyssey. Faith is the only thing to hold on to. Opinions are changeable, science is fallible, but FAITH, faith is the thing.

    And, btw, Sam doing his laps in the hospital is great impetus to me for my exercise program. Good golly, I can't let a 7 year old with cancer lap me!!!

    Prayers, healthy thoughts & positive visualizations are ALWAYS working for you, Superman Sam & your family.


  2. Holding y'all in my heart and in my prayers. Oy, I am so sorry that y'all have this new and surprising mountain to climb. I'm glad Sam isn't scared. I'm sending love.

  3. Praying for all of you, for peace, comfort and strength. God is good and in control. And, in the meantime, I'm going to get some packages ready to send.

  4. What a sucker punch to the heart. Cancer sucks, plain and simple. You have our love, prayers, friendship, food, and bone marrow if you want it. xoxoxo

  5. Just as it was at Sinai, we are all together with you. It's a mob scene so we might not see each other, but I'm with you and sending lots of xoxo from my spot in the crowd.

    ~ Jane.

  6. Oh Phyllis, I wish I knew the right words. As you likely know there really are none. What I do know is that you, Sam, and the entire Sommer family are in our thoughts and prayers.

  7. G-d willing, it'll be good. What a challenge for all of you. Take care of yourselves.
    Shabbat Shalom

  8. We've never met, but I heard about Sam from another blog and have been following his journey through your postings. I'm so sorry to hear this latest news. I can't begin to know how devastated and scared you must be. Please know that Sam, your family, and your medical team will be in my thoughts and prayers.