Wednesday, August 7, 2013

The Next Step

So....good news/bad news.

The good news is that Sam continues to appear and feel relatively well. A bit of nausea, some tiredness (I wouldn't even call it fatigue), a little bone pain....but mostly, he's fine.

He fed the giraffes today.
Sometimes it's hard to believe that this kid has cancer...
The good news is that Sam's leukemia hasn't gotten any worse. It remains a heavy load in his body, but it hasn't gotten worse.
The good news is that Sam isn't throwing peripheral leukemic blasts (leukemia that is evident in his bloodstream, as opposed to his marrow only).
The good news is that we are proceeding with transplant.

It's good news because it means we are moving forward.
It's bad news because, as Dr. M said to me today, it's not under ideal circumstances.

They'd prefer remission. (Oy, how we'd ALL prefer remission.)
But at this point, they also prefer Sam's general wellness and they fear any future chemo that could damage....something, anything, that would then make him ineligible for transplant.

In essence, they've said to us, "we want to give him a fighting chance" at a successful transplant.

The plan is coming together. There will be more chemo PRIOR to the bone marrow transplant conditioning regimen. This will be to make sure that his leukemia levels don't get higher, to make sure that his body doesn't become more hospitable to the nasty ninja cells. He'll be continuing on the protocol he just completed because we know it had minimal side effects and seemed to maintain his status.

There are many aspects of the plan that are designed entirely to fight leukemia throughout the's been an evolving plan with each biopsy that shows Sam to be not in remission.

The plan is a little unconventional. We explained it (somewhat) to Sam and he gave me a huge grin. He liked being special, being unique, doing it his own way. Who can argue with that logic? Sam's leukemia certainly doesn't follow any rules. Sam is, um, sometimes averse to rules himself. So it's not surprising that he was proud to be "special."

(Have I mentioned that I miss "ordinary" and "boring"? Sigh.)

We're no longer using the matched sibling donor. We are, instead, using a donor from the registry.* We haven't yet figured out what we'll call this Mystery Donor but we know that this person is out there, and we know that he/she received a letter and a call and some medical tests and has agreed to donate cells to Sam. We know that person will forever be a part of our lives and our family. We know that person could be anywhere. We know that the person has a very slight mismatch to Sam, and that mismatch may be the key to fighting the refractory leukemia that is Sam's biggest threat.

Truthfully, it seems like we should be celebrating a victory that Sam is finally ready for transplant but it just doesn't have a triumphant ring to it. We seek data-based hope in the hands of our doctors, who are constantly thinking about our child and his care. When these doctors tell me that they're going to have a brainstorming session, I know there's a lot of brainpower around the table. It is a move forward. It is something his leukemia hasn't seen before. And so it is the right step at this time. He was fascinated, today, for his first "real" visit to the BMT Clinic, and he is prepared to begin, tomorrow, the "workup" process which involves a whole lot of function tests to give them a baseline for kidneys, liver, heart, cognition, etc.

It's been a long hard road. We're so very far from the end of this journey. For all your support along the way, we are incredibly grateful. Thank you for continuing to be with us as we walk (and sometimes trudge) along this path.

*I know that so many of you are out there preparing for the High Holy Days, and I know that many of you are preparing to talk about the bone marrow registry in your sermons. If you're still considering it, if you're considering a swab drive at your shul on one of the holidays -- please, don't hesitate. To know we have this option available to us is one huge weight off our minds, and we would never want another family to have to wait for a donor.


  1. G-d willing, Sam will have a true refuah shleimah!

  2. Hoping, praying for a successful outcome. I think about your family so often and appreciate the updates. I'm cheering you on, Sam!

  3. Sam inspired me to get on the registry and I got my "membership" card last week. Keeping you all in my thoughts.

  4. Phyllis, I don't know you or your family personally but am friends with several of your congregants. (I live In St. Louis). I've been following Sam's journey through your blog and want you to know that your openness, honesty, and compassion for others shine through brightly in your writing. Sam and your entire family continue in my prayers for healing as you begin the next chapter on this journey that you didn't ask to take.

  5. thinking of you all. how i wish i could "be the match" for sam.

  6. My children and I are continuing our prayers and directing our positive energy thoughts to you Sam, and to all of your family. You are in my thoughts every day and I feel that I'm walking along with you on your journey.


  7. As always, Sam's Omaha fan club is cheering him (and all of you) on! It seems like Team Sam is about the very best around - from the family to the medical staff. How smart and clever of your docs to figure out the best ways around the boulders in the road - let's hope for only small pebbles from here on!

    Jane Rips

  8. Praying for Sam and for the generous donor.