04/13/2026
Vincent has been doing great. He still loves school and he's been able to attend almost every day since returning from holiday break in January. He hasn't had any recent unexpected hospital trips. He's been making progress on his academic goals. He's still super silly and full of joy. He did a great job at his audiogram last week and it's crazy to think about how stressful they were for years, until last year. I sat in that booth with Vincent so many times trying to get him to understand the "game", feeling like it was a waste of time and like he was never going to be able to complete a functional hearing test. And he has now successfully completed two audiograms and he is ready for open set testing next time which is much harder and tests beyond the hearing of sounds to how well language is understood. He also rode an adaptive tricycle at school last week for the first time ever! No one has ever been able to get him on a bike, not us or his PT at CHOP so this is huge!!
7 years ago today Vincent was dying. He was in liver failure from a rare reaction to a chemotherapy drug that was supposed to be an "easy" one. As the photo memories of that time pop up, they still shock me. It feels impossible that the little boy sitting next to me right now was intubated, in a bear hugger, on ecmo, with an abdominal drain pulling off 2 liters of fluid daily, and on a 7 day continuous platelet transfusion, the only time CHOP has ever done that. Every doctor who walked into our room in the PICU came to deliver more devastating news and prepare us for what they believed would be the inevitable outcome. I will never forget his liver function test numbers.
ALT 8,062, AST 19,283, Bilirubin 33.1
Thank God Vincent proved them wrong once again.
I haven't posted much because I stopped writing. I stopped writing because it forces me to think about the horrors we have lived through. It was easier before because all of my energy was focused on surviving and eliminating the next threat. Now I just feel like I'm spinning in circles. It's like I came home from an unexpected trip that lasted 6 years and I couldn't bear to unpack so I shoved my suitcase of feelings into the closet and locked it tight. Except that I need some things out of it from time to time and when I reach in just to grab what I think I need, an avalanche of emotions crashes into me. Every single fiber of my being carries the trauma of 6 years of fighting for my son's life. I knew that the end of treatment wouldn't be an easy adjustment but I had no idea the level of melancholy that would set in and how challenging it would be to navigate. And it feels impossible to figure out when your life can only move forward (at best) 3 months at a time until you might be told your child has cancer again.
