I wake-up early and sneak out of the dark hotel room. I make my way to the lobby to enjoy the complimentary coffee and read my book. If I position myself just right on the couch in the far corner I can be surrounded so completely with eclectic decor that I almost forget why I… Continue reading HuCAR T: 18 month follow-up- Half Truths and Tug of War.
Category: Relapse
Lemonade & Paparazzi
Our mission is to change the lives of children with cancer through funding impactful research, raising awareness, supporting families and empowering everyone to help cure childhood cancer. Alex's Lemonade Stand Foundation Last fall, after our 11th or so flight to Philadelphia, I went to book another round-trip ticket for our upcoming appointment. $749. Yikes. There has… Continue reading Lemonade & Paparazzi
for now, we aren’t running.
We went to bed on Wednesday night resting easy. The news from our last visit was slowly starting to settle. We got the initial results the day of the appointment, but the official "all-clear" came the next afternoon, once I had emailed a casual, freaking out on the inside, email to our team and asked,… Continue reading for now, we aren’t running.
Clear. Colorless. Beautiful Champagne Poke.
Jude woke-up for the first time in weeks without complaint that it was morning. I laid down next to him and showed him the two small, wooden ram figurines that my friend had gifted me after relapse. "These little guys are you and Beau. You are vicious killers," I knocked the rams horns against each… Continue reading Clear. Colorless. Beautiful Champagne Poke.
For today, an LP.
Beau is going to have an LP (lumbar puncture) this morning to sample his spinal fluid for rogue cells. I know, I know. It feels out of no where with all the "New companion!" excitement of my last post. I just had to let the ideas stand alone. Beau is in Long-term follow-up and Jude… Continue reading For today, an LP.
Heavy is the Head
I imagine all the patients at the Believe Ball felt like royalty. Beaudin did. Each of us got to wear a "CAR T FAMILY" button, and the patients wore their own badge of honor: "CAR T PATIENT." Multiple times throughout the evening I saw people walk up to Beaudin and shake his hand, remarking, "It… Continue reading Heavy is the Head
HuCART: Month 16 results or something.
All I want to do is publish this damn post. And every other damn post I've been (mentally) composing for weeks now. But each time I open my laptop- I write a bit and link a bit, and search around the site to link some more and inevitably find myself reading a post from who… Continue reading HuCART: Month 16 results or something.
Believe Ball 2022
This weekend we attended the Believe Ball put on by the Emily Whitehead Foundation (EWF). As I have mentioned in previous posts, the EWF is a large part of why we were able to get Beaudin connected with CAR T therapy as a path through relapse. I suppose I shouldn't say it's the only reason,… Continue reading Believe Ball 2022
Rebuilding & reckoning: where to go from here
Sometimes, well most of the time, I start writing exactly where I left off. And by left off, I mean left off of the train of thought in my own head. How is it all you keep up? Alas, you keep coming back. Or something. I don't even know how many of you come back.… Continue reading Rebuilding & reckoning: where to go from here
Verified.
We have to get Beaudin a COVID test for his procedures at CHOP. The procedures can happen, positive or not, but if he is positive they have to provide a negative pressure room which is in a different part of the hospital. Normally, we go to Walgreens the day before our flight. But today when… Continue reading Verified.
The Heavy Wait 