Hang on a minute. Let me blow the dust off this blog.

Sorry for the long stretch without an update. Here’s where we are…

Des is doing great. He’s in the “Delayed Intensification” phase of treatment. And yes, that phase is exactly like you would expect. Intense meds.

This is one last big push before we taper down to the long-haul multi-year maintenance phase.

This Delayed Intensification is 8 weeks long and has included steroids, some new (to us) chemo treatments, some familiar chemo, and even a trial drug cristantaspase. He’s on the trial as a replacement for some chemo that he had an allergic reaction to a few months ago.

And interestingly, just after his study trial round began, the FDA approved the drug…but he’s still following the study protocols.

Side effects from everything have been mostly manageable. There’s been some nausea and appetite changes. Moodiness, tiredness, trouble sleeping. But overall he’s doing great.

Big news in home medication…he’s learned to SWALLOW PILLS. I’m pretty sure I didn’t learn that until I was older than 10. But seriously…swallowing pills has been HUGE for for us. It takes the stress level WAY down at medication time.

We’ve enjoyed the summer; playing outside, reading a ton, playing games, and doing virtual camp with the Kids Cancer Alliance. There’s been swimming and bikes and playgrounds. Strangely, the summer with cancer has been more “normal” than the pandemic summer of 2020.

It’s been 193 days since that first visit to the emergency room. And before we know it, another 193 days will pass.

I don’t know for sure what’s coming up next but I can tell you we’re going to take it one day at a time, looking forward, staying optimistic, and praying a lot.

Categories: Uncategorized

Matt