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: HuCAR T
HuCAR T: 18 month follow-up- Living Jude’s Best Life.
Jude watches out the window as the plane gains speed for take-off. "Beau! Beau!" he grabs his arm, "We are about to lift off!" "I know, Jude, I have done this before," Beau says tenderly, but he turns and smiles at me. I told Beau last night that Jude was going to be excited, and… Continue reading HuCAR T: 18 month follow-up- Living Jude’s Best Life.
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
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