*This is one of many posts that mentions our sweet friend Emily. I have made a separate category for the times I wrote about her. If you would like to read more about her, please click on the category "Sweet Emily"* This weekend it began- spring sports. Joshua hurried off in one direction with Jude… Continue reading Swiftly Kicked in the Stomach
Catch up on Part 1 here. Jude didn't want to be alone while he was in and out of throwing up. He was scared. Joshua and I took turns laying with him and assuring him he was going to be ok. At one point, laying on the bathroom floor he kept asking a lot of… Continue reading HuCART: Month 6 results Part 2
*unedited, sorry for typo's* Part 1- LP results On Tuesday Beaudin had his 6-month, post HuCART procedures. As you'll recall, his b-cells retuned in late December and despite returning to Philly and doing a boost in January, continued to come back strong. 6-months was technically February 8th, but because we were hoping the boost would… Continue reading HuCART: Month 6 results Part 1
You can read Part 1 of this update: Here. The benefit of a visit to Philadelphia without any procedures was that we got to have an in-person conversation with the CAR team. We are at a fork in the road, and it felt relieving to make a plan to move forward with us all in… Continue reading HuCART: 6 month CHOP visit part 2
Part 1 We are back from Philadelphia with everything and nothing to show for it. We had expected to have Beau's 6 month LP and BMB performed, but the procedure didn't happen because of a cold that he had been brewing for a couple days and seemed to hit it's peak at the exact moment… Continue reading HuCART: 6 month CHOP visit part 1
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 diagnosed… Continue reading Beau’s cancer story
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.
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 to… Continue reading Same Island, Less Denial