Cutting the dex
Yesterday’s chemo visit went well – it’s about an hour drive in traffic, and the first snow of the season was in the forecast for the afternoon, but mom and Wes were home earlier...
Leukemia and Wes Blog
Stress management
I’m going to have to do better, somehow, at managing my stress levels. Over the past few years my work has been fairly solo, and the challenges mostly technical – activating some extra neurons,...
A little bug can be a big deal
Neither of us have ever been germophobes with Wes, and fully bought into the notion that a little filth was good for his immune system development. We let him play barefoot all over Long...
Diagnosis, prognosis, and treatment
We’ve gotten a lot of questions around what, exactly, Wes’ diagnosis is, what the treatments look like, and what his chances are for recovery and return to health. I’m going to try to summarize...
Life as a pre-existing condition
Unless our national healthcare policy changes, for the rest of his life two-and-a-half-year-old Wesley is going to be punished for what happened to him this year, through no fault of his own. He –...
Surrounded by heroes
Every day for the past week we’ve interacted with dozens of staff and volunteers at Children’s Hospital of Philadelphia and it’s impossible to put to words what heroic humans these are, though I’d like...
Homeward bound
A rare view outside After a few days of stable recovery the team here thinks Wes is ready to go home tomorrow. He had a minor fever after his procedures Wednesday which put him...
Grief needs to be channeled
Hospitalization is a remarkable stressor, and for parents whose children are seriously ill it can trigger all kinds of behavior that may otherwise be dormant. This morning alone I’ve witnessed three fathers acting out...
Turning it off
If you’re the parent of a healthy child, I completely understand being unable to process our story. Until exactly five days ago that was me too. It’s too hard to contemplate how quickly, without...
The kids are amazing
It’s really remarkable and impossible to overstate just how strong and resilient the kids here are. Some of these kids have been undergoing treatment for years but they are still full of smiles and...