Beau’s cancer story- the quick and dirty.

I wanted to get the high-level of Beau’s story in one post so that a newly diagnosed, or newly relapsed cancer, parent could have a single place to read about it. Would I like them to read every post I’ve written? Well sure, but I know how the frantic google search of a newly diagnosedContinue reading “Beau’s cancer story- the quick and dirty.”

Empathy once desensitized

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 manyContinue reading “Empathy once desensitized”

Breaking News: [this] creates more mysteries.

There was an interesting news article floating around yesterday that I wanted to share. 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 researchContinue reading “Breaking News: [this] creates more mysteries.”

Same Island, Less Denial

Our trip to Captiva, November 2021. Denial Island hit different this year. Last year we packed up and fled to denial island days after hearing that Beau had most likely relapsed and that we would be spending 28-days inpatient starting December 6th. There is nothing like the threat of a monthlong inpatient hospital stay toContinue reading “Same Island, Less Denial”

HuCART Boost Day 4: a whole lot of nothing

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 toContinue reading “HuCART Boost Day 4: a whole lot of nothing”

HuCART Boost- Pre-chemo Part 2

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”

HuCART Day+129: January in Philly

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 intoContinue reading “HuCART Day+129: January in Philly”