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: Sweet Emily
Dear Zach. An Update on Beau (& Jude)
Once every six months, or so, I write a letter to the Fellow that Beaudin had during the first 2 years of his treatment. The Fellow moved on from our hospital around when Beaudin began his trial at CHOP. Below is an embellished version of my recent correspondence. I sent a fraction of what is… Continue reading Dear Zach. An Update on Beau (& Jude)
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
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
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
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
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,
HuCART: 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 of the ordinary, but because the weeks leading up to it were surreal. In late April dear Kamden passed away, and then a week later… Continue reading HuCART: Month 9 results
Swiftly Kicked in the Stomach
*This is one of many posts that mentions our sweet friend Emily. I have made a separate category for the times I wrote about her. If you would like to read more about her, please click on the category "Sweet Emily"* This weekend it began- spring sports. Joshua hurried off in one direction with Jude… Continue reading Swiftly Kicked in the Stomach
HuCART: Month 3 results.
It’s all clear. All good. All what we want. No leukemia in his spinal fluid. No leukemia in his bone marrow. No b-cells in either. No leukemia in the MRD (minimal residual disease). Next Gen Sequence is still outstanding but we have no reason to think it will reveal anything. It never has, even after… Continue reading HuCART: Month 3 results.
The Heavy Wait 