Yesterday (February 10th) Beaudin received another triple intrathecal (IT) chemotherapy (administered into his cerebral spinal fluid via a lumbar puncture, L.P.). Coming out of our appointment at CHOP, we have a lossely held plan to continue with our current regimen until return to CHOP in April’ish. The good thing about CAR T therapy (vs. bone marrow transplant) is that the patient does not need to be in complete remission to move forward with treatment. It is ok if there is some disease. So, we have decided to continue doing, more or less, what we were doing before, biweekly IT chemotherapies, monthly Vincristine chemo, and daily oral at-home chemo and waiting.
Oh, the waiting. The gift of time. Of weeks between appointments, sips of normal. That all feel fleeting. Like we are working with borrowed time.
Aren’t we all working with borrowed time, though?
At clinic, I asked his team if it was possible to push the L.P.’s out a bit and perhaps do them once a month rather than once every two weeks. CSF-only relapse is tricky because it is unknown how the treatment of it affects or allows the progression to a full bone marrow relapse. Basically, (oh so basically) you don’t want to under-treat it because might that allow a full bone marrow relapse to take hold, but you also don’t want to over-treat it because, as you may have forgotten, toxic chemotherapy into the spinal fluid is… toxic. We had been hoping the CHOP CAR T therapy would move a bit quicker, but now it is stretching out and with each passing week, another L.P. is being scheduled. Which in the long run will mean very little, but in the here and now is more neurotoxic chemicals in his brain.
So, among all the other clinic things, we discussed if it was safe/wise/responsible to space out the spinal fluid chemotherapy. And let me just say, weighing the cost benefit of limiting toxic chemotherapy to your first borns spinal fluid against the risk of a full bone marrow relapse is…. exhausting.
Our attending called later that day, at 5:00pm, with the results from the L.P. and I pushed the call to voicemail. I have never, in the two years since cancer slammed front and center into our life, ever, not once, pushed a cancer call to voicemail. But yesterday, I was done. The day was long and arduous and despite being our millionth time at the hospital, it was the first time I cried in front of our attending. 755 days in and it was the first time I cried.
I’ve mentioned before that the wait time during relapse has been particularly tiresome. All the things there are to consider and wonder about while we wait. wait. wait. The waiting had surfaced questions. Questions like, “Did the cancer never really go away? Has he had it all along? Did all the chemo not work? Or is it actually back? Like it went away, and came back.
Yesterday I pulled our attending aside and asked her to join me in the hallway.
“I feel like I am kind of back to square one… Can you explain why Beau relapsed? Like, I guess, I don’t know.” I was weeping. It came so quickly and I hated it. I had legitimate questions and the tears streaming down my face and breaking in my voice made me feel completely discredited, like I was just having a break. It made the question feel existential, and in ways it is, but I was asking for data. How do relapses happen?
“What I mean to say is, during delayed intensification I thought we ‘re-set’ his bone marrow production center. So where are these rogue cells coming from? Did it not work?…Did none of it work?” Suddenly a photo reel of images was racing through my head and the tears falling from my face felt toxic.
*Beau in the hospital bed at diagnosis so excited to see the Rockies players who had come to visit and too weak to sit-up* the back of his arms bruised completely from blood thinner injections* his bald head at the swimming pool where that one kid made a joke of him* his broken collar bone* him laying on the couch nauseous while he missed the 4th of July neighborhood bike parade* the gas station bathroom where he had thrown-up after the neon yellow methotrexate.*
I couldn’t stop myself from reviewing every single thing we’d put him through. The tears streamed down my face, each one holding a toxic memory of life with pediatric cancer. “Why did we do all that if it didn’t work?” It sounded like a question, but I wasn’t expecting an answer. It wasn’t a question, it was a lament.
She talked through things with me and I did my best to listen. I was self-conscious of my tears and none of it was making sense. It was all what I had heard before. The chemo had worked but it had missed, likely, a single cell. That cell, being leukemic, forgot to die (one trait of leukemia is the breakdown in the cell cycle, causing those cells to forget to die- they just hang out and replicate slowly).
Did you know that in a drop of blood the size of a pinhead, there are over 5 million red blood cells.
All of that toxic chemo, and it missed one fucking cell.
The social worker, a woman who we’d barely seen since diagnosis because of how “easy” our case had been, but was now a constant figure, walked up and put her hand on my back. The attending was answering the questions I had asked and I realized that what I really wanted to know was not something she could tell me.
Why am I the mom that 775 days in is crying weepy tears about unanswerable questions in the hallway of a fucking cancer ward.
How did we get here?
How are we going to get out?
I did my best to limit the shame I felt after my weeping in the hallway. Surely it wasn’t the first time that the pediatric cancer attending had seen a parent cry and ask the unanswerable questions. But it was my first time. Naturally, she was kind, but not overly emotive, because how could you be if this was your job day in and day out.
The social worker and I spoke about what kind of support we’d need for our time in Philadelphia. It felt like a question that held everything. I only realized after a moment that she wasn’t asking it rhetorically.
Before we left, the fellow on Beau’s team stopped by to say “hi”. Perhaps because he was the first to talk with us about cancer, back in the buttercream yellow room, or because he is my age, I have a tenderness for him. For dedicating his life to keep kids like Beau alive. He updated us that he had had a good interview in Wisconsin and was really hoping to land the job because his wife (also a pediatric doctor) had already been offered a position there. As a fellow, at the end of his fellowship at CHCO, he must find a new position.
“Would it be possible to work different places, long distance? If you don’t get the job?” I asked, knowing from our previous conversations that the job search was complicated and the positions for his role were few and far between.
“Yes, it’d be possible. But not for us- we are having a baby if May.”
“A baby! Zach!” I wept, again. These time the tears were healing and full of joy. New life. As it should be. New life bringing joy and expectancy, even on the cancer floor.
So, yes, at 5:00pm that afternoon, when the attending called with an update on the L.P. results, I pushed the call to voicemail. I was done. I couldn’t do any more cancer things.
“Hey Betsy, it’s Dr. Maloney. Beau’s L.P. looks great, no abnormalities, just 3.5% blasts, which is way down from his previous. I think doing the triple last time really helped. Since he had another triple today, and the Vincristine and the steroid pulse, I feel comfortable pushing his next L.P. to 4 weeks instead of in 2, like we talked about. I’ll have Emily schedule it, and I’ll try to connect with you later this week. We are going to figure this out, Betsy. We are.”