Well. The boost didn't work. I suppose there is a more poetic way to say it, but I mean, are we not just about over trying to make a story out of this slog? Oh, just me? Ok, fine, I'm not over it. That's hyperbolic. I am just tired, tired of the dark room. In… Continue reading Results and a podcast!
I did the thing. The thing people do when they’ve become medically desensitized to pediatric cancer. The thing that when you are freshly diagnosed feels like something you would never, ever, be capable of because there is no way that any of this will ever feel normal. But after your child has had so many… Continue reading Empathy once desensitized
There was an interesting news article floating around yesterday that I wanted to share. https://www.nytimes.com/2022/02/02/health/leukemia-car-t-immunotherapy.html The article is a high-level summary, a feel good story, of two patients who received CAR T 10+ years ago, when the treatment was even more in its infancy than it is today. Research began in the adult population, as… Continue reading Breaking News: [this] creates more mysteries.
Beaudin and I arrived home late last week and we are SOOOO GLAD TO BE HOME. Pardon while I shout it from the rooftops. Nothing like a couple solitary weeks in Philly to make you come home and drink in allll the goodness. I walked around the local grocery store yesterday and couldn't get over… Continue reading Home again, Home again.
I always have big intentions to come to Philly and in all my "spare time" do so much blogging/writing that I finally feel caught up. But as it would turn out, I will never feel caught up. I could write every day for the rest of forever and still feel like there is more to… Continue reading HuCART Boost Day 4: a whole lot of nothing
Part 1 can be found here. My mind feels foggy. Like I have a hyper focus on the smallest of details, and yet the inability to focus on anything. I turn on the tv and watch endlessly while I can't connect with caring about anything that I see. Should I change the channel? Meh. Apathy.… Continue reading HuCART Boost- Pre-chemo Part 2
Part 2 can be found here. Here we are again, back in the city of brotherly love. To be honest, it always feels a little bit like coming home when we arrive in Philly. The body finding its ways inside of sustained trauma. It looks for comforts and familiarities. Our plane lands in Philly and… Continue reading HuCART Boost- Pre-chemo Part 1
This week at Beaudin's lab check, his b-cells were at 6%, up from 2.7% last week. So, we return to Philly. We boost. All January plans, flipped on their head. Doing something comes more freely to my spirit than waiting and as such when we saw the 6% results it felt a seamless transition into… Continue reading HuCART Day+129: January in Philly
An update. Beau had clinic on Tuesday. Unfortunately, his labs showed a b-cell return of 2.7%. This may indicate his t-cells are fading, but it is not considered an “official return” until b-cells return at >3%. B-cells levels have been known, in rare cases, to fluctuate and go back down so we are going to… Continue reading HuCART Day +119: 2.7% b-cell return
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.