Deeply Conflicted
February, 2021. End of treatment was originally supposed to be a year from now, but here we are, a year early, all together and intact, and yet I am struggling to find a way...
Author: Roger Howard
The End is Within Reach
More than 800 days ago we were blindsided by the quiet havoc of a tiny genetic mutation: our beautiful Wes had cancer. Over the past two and a half years, he has been subjected...
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...
Two years
Two years ago today we got an urgent call from our pediatrician telling us to pack a bag and head to the Children’s Hospital of Philadelphia as soon as we could. In a handful...
So hard not to worry
Maybe, probably, worry isn’t the right word. I don’t consciously wonder what-if and obsess over abstract concerns, but living with a child with cancer means we are never more than a minor symptom away...
600 days in
Tomorrow will be 600 days since Wesley’s diagnosis, with about 250 more days of treatment to go. I haven’t felt much like writing about it lately – not since we went into quarantine in...
Wes’ Ginormous Birthday Parade
Leading up to Wes’ fourth birthday I felt an increasing sorrow, that after so many long months of treatment, after such a rough winter, that this time – the first time he’s actually looked...
When “place of service” is imaginary
Wes has been prescribed monthly IVIG therapy – an intravenous immunoglobulin-G infusion designed to boost his antibodies, of which he’s in very short supply. Initially they scheduled IVIG to occur on the same day...
Medical necessity of “place of service”
Just when I think we’ve heard it all, our insurance company throws another indignity at us. Wesley’s current treatment regime is mostly at-home, though (to oversimplify) he has a monthly spinal (LP) for which...