After CAR T therapy in March of 2021, Beaudin had full b-cell return by Day 28. We decided to move forward with the Humanized CAR T trial
In August 2021, Beaudin returned to Philadelphia for the HuCAR T infusion. That round of cells lasted for 4 months before the T cells began to fade in December 2022. He received a cell boost in January 2022 that was unsuccessful. We have chosen to take a “wait and watch” approach as he has been NED since right before the original CAR T in Spring 2021.
Blog posts about HuCAR T, specifically can be found below. For all CAR T posts, please visit the page by the same name.
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,… Continue reading Only if we help, shall all be saved
Sometimes, well most of the time, I start writing exactly where I left off. And by left off, I mean left off of the train of thought in my own head. How is it all you keep up? Alas, you… Continue reading Rebuilding & reckoning: where to go from here
Dear Beau, Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in… Continue reading Dear Beau, on the day of your port removal,
*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… 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,… 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… Continue reading HuCART: 6 month CHOP visit part 1
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… Continue reading Empathy once desensitized
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… Continue reading Breaking News: [this] creates more mysteries.
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… Continue reading HuCART Boost Day 4: a whole lot of nothing
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… 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… Continue reading HuCART Day +119: 2.7% b-cell return
Tomorrow Beaudin and I will travel to Philadelphia for his Month 3 tests. This will include a bunch of blood work that includes, but is not limited to, checking for b-cells in his peripheral blood, a bone marrow biopsy to… Continue reading HuCART: Month 3 trip to Philadelphia
Thanks for indulging my creative side with my last post. Such different content than the cancer side of things, so different in fact that I felt immediate shame about creating and posting it. What business do I have being carefree… Continue reading Seasonal Jammies & Month 2 Results
As mentioned in our last update, things were pretty hard for a hot minute. The trauma of it all is not helped by siblings being worried about their brother, and their brother crying for them to “go away” every time… Continue reading HuCART Day +20: Mini golf and school.
The morning after posting the last update we took Beaudin to the ER with a fever and severe headache. The fever had been brewing through the night and finally, come morning, shot up at 101.9 F requiring an immediate trip… Continue reading HuCART Day +5: Hospital overnight and confusion.
When Beaudin got CarT back in March, he didn’t have any sign of symptom of a reaction until Day +5, at which point, he had a terrible headache and decent fever for about 12 hours. That was it. His inflammation… Continue reading HuCART Day +4: Headaches and an orchard.
This past weekend we set out to find some good ole’ nature to dip our toes in after 5 full days in the big city. City life is a trip. It’s so hot and so humid and while I am… Continue reading HuCART Day -3: Weekends are for the country.
A long time ago, back when I thought this would surely, surely!, be a simple and quick, straightforward little leukemia stint, I had an, oh so humble, little thought that I would write about our experience and it would be… Continue reading HuCART Day -4: For the sake of the roadmap to freedom.
Dear Beau, All your friend’s parents are posting first day of school pictures. I was thinking of taking a picture of you leaving this morning. I imagined having you hold a chalkboard sign that read “Back to Chemo.” Instead you… Continue reading Dear Beau, And so we begin again. HuCarT Day -7
The other day one of my best friends asked if we had made it to Philly, as the night prior I had told her we were leaving for Philly [tomorrow]. My reply, “This questions makes me wonder if you don’t… Continue reading A 27-hour road trip. Denver-Philladelphia.
Read part one here. Less than 48-hours we were back in Denver and my mom was driving us home from the airport. I checked the MyChart app to see if Beaudin’s blood/lab results had posted. When I opened the app… Continue reading 3 month post CAR T check-up: A Quick Trip to Philly- Part Two
It’s been over two weeks since our trip to Philly. The cliff-hangar where I told you all that we were going to check and see if Beaudin’s cancer had returned and then went radio silent. We found out the results,… Continue reading 3 month post CAR T check-up: A Quick Trip to Philly
I am wondering when I will stop counting up from March 29th (1st CarT transfusion day) as the basis of where we are at on this long, winding road. I suppose I could say we are: Initial Diagnosis Day +887… Continue reading Car T Day +86: IVIG, fever, and baseball.
Last week Beaudin had his t-cell apheresis completed locally at our hospital in Denver. Beau had his cell collected. He rocked it. He said the PowerWand line placement was a 2 on the 1-10 pain scale. Which says a lot… Continue reading Three doctors walk into a bar: second T-cell collection
Ok. It’s 6am and my search history so far has been around the topic of humanized mice protein and clinical trials in Seattle, Philadelphia, and anywhere in between. It’s going to be a lively Saturday to say the least. For… Continue reading Humanized CAR-T and late summer in Philly.