Long Term Maintenance

Eight months of treatment reached a fever pitch (pun intended) last month with Delayed Intensification, that landed him in the hospital for over 19 days in June, ending early last week when his ANC finally came up far enough above zero to go home.

Today, Wes begins the final, and longest, phase of treatment – Long Term Maintenance (LTM). The name makes it sound easy, but as we’ve discovered none of this is easy. While it will be the lowest intensity treatment phase, he’ll still have more meds, more procedures, and more clinic visits in a month than most kids get in their entire childhood. Monthly lumbar punctures (LPs, aka spinal taps) with intrathecal chemo, as well as the same IV chemo that’s caused him so many problems to date. Daily 6MP (mercaptopurine). Frequent steroid pulses that typically lead to radical mood and appetite swings. And all the drugs to counteract the above. And that’s if things stay on track.

The real challenge is the duration – right now we’re scheduled to end this phase in February 2022. That’s a long time. We were told unofficially that they may cut a significant chunk of this time off, but until we get the roadmap today from oncology it’s just a rumor. Even then, we’ve got significantly more time ahead than what’s passed to date.

Wes is doing great, all things considered. We’re all tired, and spend a lot of time in low grade shock. The ups and downs are rough – it’s hard to even get through a day feeling carefree, we’re always on guard, there’s always a sign or symptom to monitor, something to deal with, to follow up with.

It’s nice to be entering LTM. We try not to let our hopes get up too much, and instead focus on one foot in front of the other, one step ahead, rather than what could happen in a year, or two. We still have more than eight years ahead before we could hear the words “cured” spoken about Wes. It’s a long road, but so worth it.