Finally, an update with information that is helpful. Anyone? Is anyone waiting on some information that actually confirms something practical, that grounds us in this swirling relapse mess? Anyone? ANYONE? Just me? Ok, whatever.
Despite being told on November 9th that things weren’t right, and on Dec 8th that it was still headed poorly, and then despite collecting Tcells in early January, and then visiting Philly in mid February, this whole thing, relapse, has left me feeling completely untethered in a sea of “this is unbelievable.”
So, when the Philadelphia area came through on my phone I was thrilled to answer and here Brooke’s greeting, “Hey Betsy, I have an update. I told you I’d call,” despite in being a touch condescending. I had emailed a couple times. Fine, weekly. Asking, in my most kind way, for a DAMN UPDATE! and Brooke, in her most kind way, kept pushing me off. And it wasn’t a general push off bc she wasn’t sure. It was a push off because she knew something, but it wasn’t the time to let me in on the secret. And that was dumb.
Alas, she called and was ready for the big reveal. When in the world was our life being upended for 7 weeks in an unknown city for a medical experiment?
Well, I guess to tell that story I must first tell this one:
When Beaudin was diagnosed we were told that he would be in treatment for about 2 years. The exact end date would be two years from the start date of the phase of Frontline called Interim Maintenance 1. With a January 17th diagnosis, 28 days for Induction and 28 days for Consolidation, Interim Matinenace 1 would start March 22, 2019. We would complete treatment on March 22, 2021.
794 days. We began counting down.
Some seasons went faster than others, but the slowest season of all started on day 661 when our doctors told us that Beaudin’s routine Lumber Puncture revealed rogue cells that indicated relapse.
I guess we stopped counting that day, because the finish line has been obliterated with this update.
The other day Beaudin mentioned confidantly to someone that he would be done with chemo on March 22. It stung. We’ve been open with him about CarT therapy, but we have treaded lightly, balancing what he needs to know vs. what will worry him.
Do you explain to him that the cancer is back and that it’s fucking horrifying, and that that random spur of the moment trip to Florida in November was actually a full out panic that we didn’t have much time left with him. Or do we detail that once you relapse, you are hurled into the group of people that are far more likely to die from Leukemia, the cancer we have told you all along, “you won’t die from, sweetie.” Do we explain the chemo didn’t work, that all of that we thought was for sure, but turns out was a big fucking experiment and sorry, the odds weren’t in your favor and suddenly you are part of the 4% relapse?
No, obviously. We didn’t tell him any of that. We told him that there were some rogue cells that Dr.Maloney was not happy with and that the chemo wasn’t killing them, so we needed to take some of his cells and make them super killer attack cells, and they’d do what the chemo was failing at. That’s what we told him. And some day I’ll write about that conversation. But for now I’ll just drop here that it was hands down the worst conversation I’ve had in the entirety of my life. Ok, great.thanks.
Anyway, he knew we’d be in Philly for some different kind of medicine, not chemo, that would help kick out those last few cancer cells. He knew we’d be there for weeks and that he’d have a gazillion pokes and prods. And not because anyone spoke it, but because this is where pediatric cancer drops you, he knew he had no choice. I thought he understood it, mostly. So when he mentioned March 22 as the “last day of chemo,” I cringed, worried he missed the point. This isn’t over baby. He said chemo, but it felt like he meant cancer. We’ve used the terms interchangeably. When “chemo” ends, often encapsulating, “When this cancer nightmare is behind us.”
Anyhow, back to the phone call, the DAMN UPDATE.
I received a call from Brooke at the hospital, updating us on next steps in relapse therapy. I wasn’t expecting the call, having been told we would likely be headed to Philly in late April and, as such, would be contacted with details in March. I had been told in not so many words, “Don’t call us, we’ll call you…and it’ll be in March.” So when I saw the call come through at the end of February, I was at the ready, and caught off guard.
“Hey, I know you weren’t expecting this call so soon, but there is an open spot. We need you guys here to start treatment at 8am, March 22nd.
March 22, 2021. I gasped. I choked on my breath and held back tears. What?! How?! You told me it’d be April, I have been planning towards April, I’ve been praying it’d be sooner, begging you’d call yesterday every single day since we left Philly. And now you call, and tell me March 22? What?!
On March 22, 2021 Beaudin is going to begin a treatment to receive his engineered T cells in hopes that those cells will hunt down & destroy the last few cancer cells in his body, and allow a lasting remission. This cancer nightmare will be behind us.
“Make sure that he takes his last chemo dose on the night before.”
March 22, 2021. It remains.
It feels like everything & nothing at once. Like serendipity & paradox in the same breath. Like it’s so heavy with meaning I can say few words that make any sense of it. A blessing or a cruel joke. The meaning escapes me and surrounds me, at once.
I shared this info on social media the other day and the comments overwhelming leaned towards God’s provision, His blessing, His Divine hand. I’m not there. It doesn’t feel painful, or offensive for that interpretation. It is just markedly not where I am at.
Is it conincidental, yes, Divine? perhaps, but to me it feels painfully ironic. The day that was meant to put a heavy, painful chapter behind us, now appears to be the comma and not the period we all prayed for. My desperate plea is that the story after the comma is one of lasting remission and complete healing, but as that was also my plea for the weeks leading up to diagnosis, at diagnosis, and every single day of the 771 days since we were told it was cancer, you can imagine why I am not thrilled with the comma, why I am not gushing at the comma, why I am not relishing the comma as God’s goodness. And why frankly, the comma leaves me more bewildered than ever.
This isn’t the end of the story. But I also don’t think this is the silver lining. This is the heavy wait. The chemo is over, we will pray the remission sticks.