Beaudin and I waited in line to meet Dr. June. He is one of the brilliant doctors behind CAR T therapy and, as far as Beaudin cares, is a celebrity based on the documentary film we got to view the night before the ball. Many families wanted to meet him and as such short queue… Continue reading Beaudin L. #1
Category: General Cancer
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
Intoxicating Trauma
Sweet Emily, Part One I keep meaning to write about it. The composition swirling around in my head every time I notice something that reminds me of her, of it. But there is something about trying to force into words the experience of a child's funeral that feels utterly impossible. I think I'd start with… Continue reading Intoxicating Trauma
It’s hard to convey, a CAR T essay
Today the kids are back at school. Every last one of them. Praise Be. If you've been here a minute you know that we have been here, there, and everywhere as far as school goes. Starting at one school, leaving because of mold, homeschooling, then relapsing and falling into the gracious hands of our local… Continue reading It’s hard to convey, a CAR T essay
Mozzies
This weekend Selah sat outside all afternoon, playing with her new water beads and was eaten up by mosquitos. I would say "eaten alive," but I said that in front of her later that evening when showing the bites to Joshua and she was quite take aback by the mental image. She's got the genetics… Continue reading Mozzies
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.
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
Leben jetzt und hier
It was July 2008. We were young and wild. We stayed past semester end to travel the Adriatic coast, the world our oyster. We debated a tattoo to consecrate the summer that was slipping away. We wandered down the river in Vienna one evening and, quite literally, stumbled into a music festival. "Leben jetzt und… Continue reading Leben jetzt und hier
The Heavy Wait 