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: Updates
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,...
Two years
Two years ago today we got an urgent call from our pediatrician telling us to pack a bag and head to the Children’s Hospital of Philadelphia as soon as we could. In a handful...
600 days in
Tomorrow will be 600 days since Wesley’s diagnosis, with about 250 more days of treatment to go. I haven’t felt much like writing about it lately – not since we went into quarantine in...