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,...
Leukemia and Wes Blog
22
I haven’t really posted much during #childhoodcancerawareness month because my mind has needed a bit of a break from everything. So much so, that between treatment & Roger starting a new job next month...
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...
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...
Zero to Twenty 😰
On June 4 Wes and I rushed to the ER in the middle of the night. He had a fever, and we suspected it was the result of neutropenia from the barrage of new...