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...
Category: Treatment
Baby make me feel better
“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,...
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...
Huge News
For months we’d been hearing that COG – the body that designs the standard treatment protocols that Wes’ treatment follows – was rolling out a shortened protocol for Standard Risk boys. Under the previous...
Beads of Courage
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...
Long Term Maintenance
Eight months of treatment reached a fever pitch (pun intended) last month with Delayed Intensification, that landed him in the hospital for over 19 days in June, ending early last week when his ANC...
The neutropenia rollercoaster
We managed to convince ourselves we were surely going home together today in spite of almost 8 months of canceled plans and unpredictable days telling us to never get our hopes up. After two...
Bitter
I’ve been increasingly bitter about the hand my sweet Wesley was dealt. His tears, pleas for no more pokes, meds, machines. My heart breaks more every time because he’s getting older and understands more...
200 days in, 1000 to go
Today it’s been 200 days since Wes’ diagnosis, with at least 1000 days to go until End of Treatment (EOT) and at least 3500 days until he’s considered cured. It’s a marathon, not a...