or the beginning of the end? I’m not sure. All I know is that this week, Beaudin began maintenance therapy for acute lymphoblastic leukemia.
For him, maintenance is made-up of 12 week cycles. Each cycle, commences with a intrathecal dose of chemo (spinal tap) and an IV dose of Vincristine chemo. Following that appointment he has a 5 day steroid pulse. Through the reminder of the cycle he takes daily oral 6MP chemo and weekly oral Methotrexate chemo. These 12-week cycles will continue until March 22, 2021. Every 4 weeks during the cycle we will go to Children’s Hospital Colorado and have his port flushed (so it doesn’t clot off) and run labs. Based on the labs, they will adjust the oral chemos. The idea is to keep his immune system surpressed for the duration of the treatment (ANC between 500 and 1500). My piddly understanding of it is that maintenance will prevent relapse, and even should relapse occur, with a suppressed immune system it will go slow enough to catch it quickly because he has chemo in his system consistently. I am not entirely clear on all that. And actually the doctors aren’t either. Last night I was reading a medical journal detailing how the medical community isn’t sure how to maintenance protocol works exactly- like which drug causes which efficacy, and which duration is exactly long enough- but they just know the current protocol has increased survivability to upwards of 90% and thats enough reason to move forward not knowing everything.
All I know is were are here: Maintenance. Exactly 8 months, to the day, from diagnosis. Hardest 8 months of my damn life, but we made it.
There is plenty to worry about during maintenance, go figure, and I’ve read many stories of the side effects of the daily chemo (improper blood sugar regulation issues, consistent nausea, body aches, low ANC meaning you are not free to go to public without risk of infection, etc) BUT, our doctors seem confidant that Beaudin should have a straightforward go at the whole thing. He had a strong experience during Frontline, no severe symptoms, robust count recovery every time, etc. so they feel confident that he will fall into the “normal” maintenance experience. 8 months into this rollercoaster and 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 am not sure you ever rest again.
Well, thats not entirely true. I experienced a bit of rest the other day when my favorite Aunt Diana joined us at clinic. She flew up from Ft.Worth, TX for the day and helped us ring in the start of maintenance. First, with a clinic visit, then a lunch of bone marrow tacos (I mean, they were the Chef’s Special- I had to!,) and rounded out with time back at our house and the rest of the kids, all of whom love their Great Aunt Diana.
It was a joy to have her visit. And as with all things cancer, it was filled with, “Well, gosh, growing up I never thought for a second you’d come visit me to take my kid to his cancer clinic.” followed closely by feelings like, “It feels so good to be loved so well.”