The long haul begins here.
This post is based on COG protocol 9032; current treatment plans may differ. Always consult your care team for details specific to your child.
Maintenance therapy is the final phase of frontline treatment for pediatric acute lymphoblastic leukemia and extends over many months. While frontline treatment refers to the initial portion, Maintenance covers the final long stretch.
What Maintenance Therapy Will Include
Maintenance is made up of 12-week cycles. Each cycle begins with an intrathecal dose of chemotherapy (via Lumbar Puncture) and an IV dose of Vincristine. Following that appointment, he has a five-day steroid pulse. Throughout the remainder of the cycle, he takes daily oral 6-MP chemotherapy and weekly oral Methotrexate. These 12-week cycles will continue until March 22, 2021.
Every four weeks during maintenance, we will go to Children’s Hospital Colorado to have his port flushed (read more about port care here), run labs, and have a check-up. Based on those labs, the doctors will adjust the oral chemotherapy doses. The goal is to keep his immune system suppressed for the duration of treatment, ideally with an ANC between 500 and 1500.
How Maintenance Is Supposed to Work (and What We Actually Know)
My piddly understanding is that maintenance helps prevent relapse. And even if relapse were to occur, with continuous chemotherapy in his system it would progress slowly enough to be caught early. I am not entirely clear on all of this. And, honestly, the doctors aren’t either.
Last night I was reading a medical journal detailing how the medical community isn’t sure exactly how maintenance protocols work—like which drug provides which efficacy, or what duration is exactly long enough. What they do know is that the current protocol has increased survivability to upwards of 90%, and that’s enough reason to move forward without knowing everything.
Eight Months After Diagnosis, We’re Here
All I know is this: we are here. Maintenance. Exactly eight months to the day from diagnosis. The hardest eight months of my damn life—but we made it.
What Still Worries Me About Maintenance
There is still plenty to worry about during maintenance, go figure. I’ve read many stories about the side effects of daily chemotherapy—blood sugar regulation issues, consistent nausea, body aches, low ANC that keeps you from public places because of infection risk.
That said, our doctors seem confident that Beaudin should have a fairly straightforward course. He handled Frontline well—no severe symptoms, robust count recovery each time—and they feel confident he will fall into what they consider a “normal” maintenance experience.
Eight months into this rollercoaster, I still find myself bracing for impact. I wish I could hear their encouragement and just rest. But once a doctor has said, “It’s cancer,” I’m not sure you ever fully rest again.
A Small Moment of Rest at the Start of Maintenance
Well, actually, I felt a bit of rest the other day when my favorite Aunt Diana joined us at clinic. She flew up from Fort Worth, Texas, for the day to help us ring in the start of maintenance. First, with a clinic visit. Then lunch—bone marrow tacos (they were the chef’s special; I had to). And finally, time back at our house with the rest of the kids, all of whom adore their Great Aunt Diana.
It was a joy to have her visit. And as with all things cancer, it carried two truths at once: I never thought for a second growing up that you’d come visit me to take my kid to his cancer clinic. And also, it feels so good to be loved this well.
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