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...
Leukemia and Wes Blog
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...
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...
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...