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
Category: CAR-T Therapy
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
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.
The (well?) adjusted sibling- Part 2
Feeling pretty damn proud of myself right about now. Why, you ask. Oh, well I just stopped my freefall down the black hole of despair. Clawed my way right out. Closed the tab and opened a new one. You see, yesterday I wrote about Selah visiting the hospital and I was like, 'Oh, I can… Continue reading The (well?) adjusted sibling- Part 2
A virus, or two & Halloween.
In early October we all got the big virus that shall not be named. Joshua and I had a medium go at things, while the kids had a mild couple days of low fever and fatigue. Joshua and I both experienced a bit more with 3+/- days of significant fatigue and headache. Luckily, his picked… Continue reading A virus, or two & Halloween.
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
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 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
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
The Heavy Wait 