Beaudin L. #1
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…
Keep readingPreparing 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…
Keep readingBelieve 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…
Keep readingRebuilding & 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…
Keep readingIntoxicating 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.…
Keep readingIt’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…
Keep readingHuCART: 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…
Keep readingMozzies
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…
Keep readingVerified.
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…
Keep readingEvery 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.…
Keep readingDoing the Damn Thing.
We are back from our one-month Pacific Northwest extravaganza. It was everything we hoped it would be, probably more. But above all the hyperbole, it was truly the break we…
Keep readingLeben 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…
Keep readingChemical Sleep and Bon Voyage
The day Beaudin had his port put in, January 19th, 2019 a fellow met us in the surgery waiting room and asked if we would be willing to sign Beau…
Keep readingDear 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…
Keep readingHuCART: Month 9 results
Earlier this month Beaudin and I traveled to CHOP for his 9-month post HuCART testing. It’s been impossible to write about. Not because the trip to Philly was that out…
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The Heavy Wait 