A Burning Shell
For months now, Wes has been suffering from a difficult series of skin conditions that have at times variously covered his hands, arms, groin, legs, and torso in inflamed, dry, itchy, and sometimes painful...
Category: Uncategorized
A year and change
At least once a week I feel guilty about not writing here more often anymore. I should be telling his story better – for therapy, for our memories, for him, for other families going...
Zero to Twenty 😰
On June 4 Wes and I rushed to the ER in the middle of the night. He had a fever, and we suspected it was the result of neutropenia from the barrage of new...
Bring back noonoos!
What things are on practically every kids menu at every restaurant and institutional cafeteria in the US? Cheeseburgers, pizza, chicken fingers, and spaghetti. It’s practically the only thing this country agrees on, and while...
Delayed Intensification and Neurotoxicity
Every phase of treatment is different, it’s own challenges. Different drugs, at a different tempo; a different schedule, sometimes more in-patient, sometimes more out-patient. But it’s also cumulative – each round has been harder...
Drug-free Day
Yesterday was the first day Wes hadn’t taken any drugs in months – if we include OTC, maybe since the end of October. It won’t last, but we’re in a rare moment of peace...
Last round of IM set to begin
It’s been a weekend of change so I don’t want to let this go unremarked. Wes and I will be heading to the hospital tomorrow morning for his last round of Interim Maintenance chemo;...
Grateful for society
I’m grateful today that as we enter a new year I received approval for Pennsylvania Medical Assistance, a Medicaid program that provides backup coverage for families with seriously ill children, filling in the gaps...
On being loud for Wes
Everything about this experience is new to me. I’ve never had serious health problems and haven’t had to deal with the health care system in any significant way in my life – even Wesley’s...
Long Beach loves Wes
When we left Long Beach almost a year ago we knew we were moving away from a huge extended family – Stephanie, in particular, had built so many enduring friendships across the city thanks...