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
Category: HuCarT
Yet another trip to Philly- Send us
When we were in Philadelphia in August for Beaudin's 12 month post-HUCART tests we discussed with the team the next time we would need to come to Philly. They said that because he hit the 12-month mark without disease recurrence, the next time they would need to see us would be at 18 months (February… Continue reading Yet another trip to Philly- Send us
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.
Only if we help, shall all be saved
Only if we understand, will we care.Only if we care, will we help.Only if we help, shall all be saved.-Jane Goodall A couple of notes for the reader: The Emily Whitehead Foundation was founded in honor of Emily Whitehead, the first pediatric CAR T-cell therapy patient. This Emily, referred to as simply “Emily," is not… Continue reading Only if we help, shall all be saved
Preparing for a Ball
I waited until three days before we left for Philly to come to terms with the fact that I would have to find something to wear to my first ever ball. It's one of my worst traits, this specific variety of denial. I despise shopping, DESPISE, so, sure, I had poked around one local store,… Continue reading Preparing for a Ball
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
HuCART: Month 12 Results
It has been over 500 days since the last time there was measurable cancer in Beaudin's body. So why doesn't it feel like butterflies and rainbows to say that he remains cancer free? Trauma, that's why. Last week I was checking out at Whole Foods when I saw the Philly area-code pop onto my screen.… Continue reading HuCART: Month 12 Results
Every Damn Day
The other night over dinner a girl friend and I listened while our friend, Sarah, recounted a scary medical thing that had happened with her young daughter earlier that day. Both her daughters, now 9 and 7 years old, did this thing when they were toddlers where any time they were crying, like really wailing,… Continue reading Every Damn Day
Dear Beau, on the day of your port removal,
Dear Beau, Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in the game and were so down on yourself. The game had been a nail biter… Continue reading Dear Beau, on the day of your port removal,
The Heavy Wait 