On Nov 10th at 3:40 pm our doctors told us there were a couple of bad cells in Beaudin’s spinal fluid. On Nov 12th at just before 5pm our doctors told us they were Leukemic (FISH positive) and then some 28 days later on Dec 8th at 4:56pm our doctors told us there were still a couple of bad cells and on Dec 10th on our 6pm call our doctors told us they were still Leukemic. And then the other night, at some point in the first handful of minutes inside of an 1 hour 45 minute telehealth meeting, I became keenly aware that we had all begun to discuss the handful of relapse options as the only way forward without anyone saying the words, “Beau has relapsed.” It was clear as day. Without the actual words from the team, the only path was a relapse one. Like a deep truth that goes unspoken among trusted friend, the words were superfluous.
Frankly, it’s just not like I thought it’d be. Like the movies make it seem. Like it was at diagnosis. On January 17th, 2019 just after the completion of morning rounds when that petite blonde doctor knocked eagerly at the door and said she had an update in an all-knowing voice that made my whole body tight. I knew things were about to pivot. Within seconds she declared, “It’s Leukemia. We are sure. It is clear as day.” And that was it. It took a couple days to narrow down the type of Leukemia and risk factors, but we knew exactly what it was, a moreover, there was a clear, singular path. PreBcell ALL COG9032, “You’ll start chemo tomorrow.”
And well, I would have just hoped relapse would also be as simple. But inherently, being a relapse, wouldn’t it be obvious that simplicity wouldn’t be it’s leading characteristic. Cells that have been unmeasurable since January 2019 have now decided to show themselves. Relapse is funny. Despite how we discuss it, the cancer isn’t “back”, it never actually went away, the greatest trickery of all.
So here we are, CNS only relapse. (That means, it’s in his spinal fluid only)
A lot is known about ALL (Acute Lymphoblastic Leukemia) and, as such, in the last 40 years, survival rates have gone from zero to upwards of 85-90%. Some may say, like our doctor told us, in the buttercream yellow room with the tacky stickers told us at diagnosis, that 1.) 94% survive without incident and 2.) It’s harder on the parents than the kids.* For now, I can only confirm the later is true.
Statistics help at diagnosis however, when you step through the wormhole that is relapse, everything turns upside down and the stats become very relative. There is not a lot known about why kids relapse and so to give a statistic appears clear as mud. There are multiple kinds of relapse, multiple courses of treatment, etc. It’s not as simple as a 94%, buttercream yellow room conversation.
We can make loose correlations that a CNS only relapse is somewhat of an “early” relapse in that it is not as “bad” as a full bone marrow relapse, but “usually” would lead to a bone marrow relapse if left untreated. The science being so unknown that everything is cushioned in quotations.
So, once I am ready to address a silver lining, which is plain and simply not yet, perhaps the ‘CNS only’ aspect of this will be a gift.
For now, calling any part of this a gift feels like a kick in the face.
And just like that, just as I type with angry fury that none of this is fair, or a gift, or a silver lining, I am reminded of the moment I had when our call ended the other night with Beaudin’s doctors. The moment the telehealth screen went blank and our bedroom was silent. The moment I looked at Josh who was staring at the empty screen and I whispered, “I just love them…I don’t know how you can love someone who’s exact involvement in your life you despise…but it’s this. I love them… in my core.”
We are moving forward with some treatment options that having a hundred moving pieces and seem to change by the hour. Yesterday I recorded a 20 min recap of the path forward for close friends and family, only to then have a 30 minute call with a new nurse from CHCO (colorado) that changed 50% of the content in the video to be null and void. So as much as I want to update, it’s just too much of a moving target. Especially for my personality that seeks always communicating with accuracy and precision.
And to what end. What difference does it make if you all understand to minutia of the path. God knows. He always has.
So the update is: Beaudin has relapsed. Things are moving forward. There are scary, hard, “why us!”, decisions to be made, there is also new, cutting edge science and big possibilities. It’s both impossible and exactly right. It’s both and.
And, well, this morning at least, fresh off a call with the coordinator for a medial study in Philadelphia testing new immunotherapy drug options, it’s the nostalgic humming of the lyrics from Hamilton, a show Beau and I have memorized, “Look around, Look around…how lucky we are to be alive right now..”