Out with IM, in with DI
It’s been a bit since I’ve posted an update about Wes.
Two weeks ago we were grateful – and a little surprised – to all be together for Ruth’s birth. A few days later Wes and I went back to Philly for one last round of methotrexate (“mtx”) to wrap up his “Interim Maintenance”. As with the three previous doses of mtx he was released early, and a few days later developed fever and other symptoms, but we just barely avoided another hospitalization and the fever quickly passed and hasn’t returned. For the past week or so we’ve largely been recovering at home – he’s pushed through pain and nausea and worse, cheered up by the presence of Ruth, whom he dotes on constantly – giving all of us a chance to rest and recover from what’s been a very long several months.
Beginning April 23, Wes starts the next phase of treatment, called Delayed Intensification (“DI”), which promises to be the roughest yet with one exception: no scheduled hospital stays. He’ll be at the clinic several times a week for a new chemo regimen and regular spinals, with the goal of reducing the count of leukemia cells as well as preventing any of those that remain from developing resistance. He’ll also start back on steroids to bolster his immune system, likely also turning him into a wild, mood-swinging, hungry hungry hippo. It’s going to be a big challenge, but after six months of variations of this, and now with Baby Ruth here, we’ll get through.
By July we hope he’ll be done with DI and still in remission, at which point he’ll move into Long Term Maintenance (“LTM”). LTM, like all the other phases, sounds benign, but the reality is he’ll still be receiving chemo (and drugs to counteract the side-effects) every day, and regular steroid “pulses”, for two more years. This is the phase that concerns me most in some ways – our lives have been on hold now since late October, but during LTM we’ll face the challenge of trying to move forward again. We’ll have to rebuild social habits, get him through potty training, start thinking about school, all the while trying to provide as much normalcy for both Wes and Ruth.
It’s been a long six months, and we have a lot ahead of us, but it’s starting to feel like we see the beginning of the end at least. There are no guarantees, and we won’t be out of the blue for many years, but we’ll accept whatever milestones we can.
