Miles to go…

As each treatment phase ends and another begins we receive the next “roadmap” – a calendar of the procedures and meds he’ll be getting. In general, we have a broad understanding of what’s to come next, but the roadmap fills in a lot of detail that would, frankly, be unnecessarily overwhelming if we tried to absorb it too far ahead of time. It’s a difficult balance between wanting to know as much as possible, while enjoying blissful ignorance for as long as we can.

This week began the second-to-last phase of treatment, called “Delayed Intensification“, and it’s pretty intense. While there are thankfully no scheduled in-patient stays in the hospital, that doesn’t mean any number of causes could land Wes into a stay. What is scheduled is a lot of chemo, of several types. Multiple LPs (spinal taps), another series of Erwinia injections, doxorubucin, vincristine, and a lot more.

After this phase ends, Wes moves into the final phase of his treatment, “Long Term Maintenance”, which is still active treatment – not exactly a return to normal yet. He’ll still be receiving chemo every day for the duration of LTM, and will receive regular “pulses” of steroids – periodic injections of prednisone or similar, which is essential to recovery but also notoriously difficult as it often causes behavioral issues, eating problems, and all sorts of other side-effects.

The other hallmark of LTM is the “long term” part. We had reviewed this part of the roadmap early on, but the details were hard to hold on to. We expected it to be about a 2 year process, but after reviewing this week we discovered it’s actually closer to three years. This pushes Wesley’s end-of-treatment date back to February, 2022 at earliest.

Wes will be nearly six years old – if not older – when treatment ends, which means he’ll almost certainly need to be homeschooled for a while, and it means another year of lockdown beyond what we had thought.

There’s no question we’ll do whatever it takes to see him through, to give him everything he needs not only to recover but to have a happy childhood, a healthy adolescence, and to see him into adulthood with minimal scarring, but it’s quite possible he’ll have lingering, even life-long, side effects from chemo. We’ll deal with that as it comes up. By the time his treatment is done he’ll have spent more than half his life in and out of hospitals, being pumped with poisons and painkillers and everything else under the sun, and only then can the healing – physical and psychological – really begin.

Spring, 2022. Put it on your calendar. We’re going to party.