I did the thing. The thing people do when they’ve become medically desensitized to pediatric cancer. The thing that when you are freshly diagnosed feels like something you would never, ever, be capable of because there is no way that any of this will ever feel normal. But after your child has had so many lumbar punctures (LP’s) that you’ve lost count, I guess you start to see things more like the doctor I wrote about here, the one who has done thousands of LP’s during her career.
My new cancer mom friend, Kelly, told me that her daughter, Reese, was going to have to start interim chemo and she was anxious about it. After all, Reese was in remission and it didn’t make sense to keep on with the toxic chemotherapy.
I thought to myself, “ A couple weeks of interim chemo are nothing. She’ll be fine.”
And she will be. She will be fine. But I felt it, deep inside my heart space. It started to ache the moment my words to Kelly started playing down her concern.
This is not normal. This will never be fucking normal.
Kelly’s daughter, Reese, was diagnosed last fall and was unable to reach remission with standard chemotherapy. Beaucse of that they had to choose between Bone Marrow Transplant and CAR-T. They were able to get CAR-T at their local hospital and Reese handled it well. Unfortunately, it did not hold and her b-cells returned quickly. It did however get her in to remission, something that chemo could never do.
This is one of the greatest uses of CAR T at present- getting patients into deep remission. Now whether that remission is curative or temporary, that is what is still unknown. So if the super t-cells don’t stick around for, at the very least, 6 months, doctors recommend you take further action. So while Reese is in remission, it is likely she needs more treatment and so they have moved on to their next option: HuCAR T at CHOP.
We were actually able to meet, in real life, at CHOP last month when they came in to town to sign consent papers and collect t-cells. We had the awkward, and entirely life giving, conversation in the lobby where she introduced herself and I wasn’t quite sure who she was because who do I know at CHOP? And then she pulled down her mask and said, “Reese’s mom, it’s me, Kelly.” And we hugged and I ignored everything else I was suppose to be doing. Beaudin checked-in and got triaged by himself because I was busy with my new friend. Which shows how much we’ve both grown, really. That he went solo and that I allowed him to. He isn’t the same kid he was at diagnosis 3 years ago, and while typing that out feels obvious, it’s always a shocking things to see.
Trauma or not, time marches on. How beautiful it feels to watch your kid survive?
Anyway, where am I even going with this? Oh right, Kelly, Reese. CAR T.
So the other day Kelly told me that she got word that the HuCAR T trail has been put on hold. Well, actually, she posted to the FB relapse group we are both a part of, asking if anyone had more info about the trial being on hold. And after the first comment reading, “I think they paused it because of toxicity concerns.” I immediately grabbed my phone and called her. It felt aggressive because who has real live phone conversations anymore. But the most aggressive part was that she actually answered.
And, like all cancer friendships, it felt like we were life-long besties as we rattled off everything that we knew and processed together what it meant to have our kids seeking experimental treatment that was now on hold for being life-threatening. And that’s when she made the comment and I replied to thing which made me realize I had officially arrived. Arrived in the land of desensitization.
Kelly was communicating how because the trial had been put on hold, her team was putting forth that Reese should have interim chemotherapy, including daily oral chemo and a handful of intrathecal (lumbar puncture administered) and intravenous (IV) chemos. And while that felt ok, it also felt insane because “Reese is in remission, and why would they put chemo into her body if there wasn’t cancer?”
“Oh, yeah totally, but those chemos are simple, she will feel fine. Like you probably won’t even notice, like side effect wise.” I said the words so seamlessly and worse still I believed them.
“Yeah, its just hard because up until now any chemo that has gone into her has been to fight active cancer, and now, well, why now?” it was the genuine, heartbreak of a mama, and utterly naive.
Most people on the outside of cancer think that the word remission means that the cancer is gone. We hear remission and we all let out an exhale, we celebrate. But it doesn’t mean the cancer is gone, it means that the cancer is under control. It means the medicine is working. It means that ,for this exact moment in time, the medicine has the upper hand. When we got the call that Beaudin was in remission we celebrated. And we continued a long and slow exhale for 637 days until we got the call that flipped remission to relapse.
How bittersweet is the naivety of a new cancer mom. It’s a holy thing to witness, to steward.
In a moment I stepped back from what I’d said, from the “she will be fine” stance. I realized that I was walking for a moment alongside a mama who was realizing that remission was a lifeline she’d been given while drowning and while it was helpful, she was still lost at sea. She walked quickly through her realization that the word didn’t mean what she thought it did, and that obviously the chemo was the necessary next step. And I encouraged her to be gentle with herself. She was in the crucible of realizing that a word she thought she had understood her whole life, didn’t mean what she thought it did. And while understanding things with new meaning is part of life, understanding new meaning when you child’s body is about to be riddled with toxins is not a simple education.
Beaudin hasn’t had chemotherapy injected into his spinal column, swirled around his innocent little brain, since January of 2021. One short year and I’ve almost forgotten how horrifying it feels. We forget some things and move on, to move forward. We have to let go of some of the memories, and normalize some of the grief. It’s a matter of survival. I just never want to loose the empathy, the tenderness, the holy ground of sitting with a new cancer mama as they start to understand that none of this is what they thought.
What a gift we’ve been given to have made it this far. What a gift to walk alongside those who are just beginning.