The common cold
For weeks now, Wes has been struggling with a cold. Sniffles, congestion, and a recurrent cough have ebbed and flowed since the new year, though a few weeks ago he was still well enough...
Author: Roger Howard
What’s a port?
When talking about Wes’ treatment, the words “port” and “access” come up all the time but it’s usually obvious that most people have no idea what we mean. Nearly everyone is familiar with how...
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...
Our CHOP billing nightmare continues
When we were first admitted to CHOP back in October, 2018, we were introduced to a variety of specialists who’d be our advocates along the long, complicated path ahead. Doctors and nurses featured heavily,...
One Year Cancerversary
One year ago today our lives took on a new trajectory – unexpectedly, traumatically, permanently, and so rapidly it took us months to start to really understand what the future was starting to look...
Vincristine and Essential Drug Shortages
Over the past few weeks, the leukemia world – and, no doubt, many other cancer communities – have been in turmoil over a much publicized drug shortage. Vincristine is one of the most essential...
Wes honored by PopPop’s Kustom Kars
Over the weekend we were grateful to have Rich Nardiello, the kind heart behind PopPop’s Kustom Kars, over to the house to unveil his latest gift to a young child with cancer: a rocket-themed,...
A very long day
Yesterday I wrote for the first time in a while, about how maintenance isn’t really what you might think. To be honest, I was motivated by weeks of built up reactions to hearing many...
Maintenance is and isn’t
We haven’t written much about Wesley’s treatment lately for a bunch of reasons, but he’s certainly not done, or even near done – there are twice as many months ahead as behind us, and...