Deeply Conflicted
February, 2021. End of treatment was originally supposed to be a year from now, but here we are, a year early, all together and intact, and yet I am struggling to find a way...
Category: Treatment
The End is Within Reach
More than 800 days ago we were blindsided by the quiet havoc of a tiny genetic mutation: our beautiful Wes had cancer. Over the past two and a half years, he has been subjected...
❤️👩⚕️😭
Wes had his cardiology appointment today to try figure out what was going on with his heart. His heart rate was pretty elevated a couple weeks ago and gave us a bit of a...
Matters of the Heart
Yesterday was a long day that consisted of a lot of what the fucks. Tldr: everyone is home and fine, but we don’t really have answers. I woke up well before dawn with the...
A Burning Shell
For months now, Wes has been suffering from a difficult series of skin conditions that have at times variously covered his hands, arms, groin, legs, and torso in inflamed, dry, itchy, and sometimes painful...
The Darkest Places
I wonder when, if ever, we’ll see Wes bruised, limping, tired, moody, or any number of totally normal 4 year old traits and not immediately spiral to the darkest places. After a number of...
Forever Away and Tomorrow
It’s hard to put into words all the emotions that come and go on these days. I was shocked and immensely proud of Wes as he informed the nurse to do his “owie” slowly,...
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...