The new normal
Over the weekend Wes seemed to be rebounding from the end of his dex treatment – mood, interest in food, and activity were all getting better than they’d been in two weeks – but...
Tagged: Induction
Soon to be four
In late summer we shared the great news that Stephanie is pregnant again, an incredibly happy moment we’d been waiting for ever since we found out just how great this parenthood thing fits us....
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...
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...