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.
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.
Long-Term Follow-up and a new companion
I debated on that title for hours. I mean, the audacity to consider putting that in print. I reminded myself I can always go back and edit it and so I finally just hit, "publish". This blog is more of a place holder than a printing press, I remind myself over and over. So fine,… Continue reading Long-Term Follow-up and a new companion
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)
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
Our Christmas Baby
Jude was born on December 25th and it seems we are forever trying to make-up for the short end of that stick. Of all the kids, why did our middle, who already has the greatest chip on his birth order shoulder, get the worst birthday too? We always buy him separate gifts, as advised by… Continue reading Our Christmas Baby