A journey with childhood acute lymphoblastic leukemia
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...
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...
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...
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 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...
“Baby make me feel better” I love that they help each other so much in different ways. We are so grateful to be at CHOP, which has a good supply of #vincristine, the very cheap,...
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...
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...
Today Wes hit Maintenance. He’s done with Frontline – the first four horrific phases of treatment for #acutelymphoblasticleukemia This string of beads is about 20 feet long with about 600 beads. Each bead represents something...
