Beaudin completed Car T Therapy at Children’s Hospital of Philadelphia in March 2021. Unfortunately the t-cells did not persist. Although he is “cancer free” with immeasurable cancer in all prognostics testing, because of the lack of persistence, the team felt more treatment was needed to ensure a forever remission.
In August 2021, Beaudin returned to Philadelphia for a Humanized Car T trial.
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
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
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
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
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
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
Please enjoy this break in dreary cancer content while I review the most *basic* fall month on record. Praise be that I have almost nothing to report, except my out of proportion joy at the simple things we have been
On Day 28, Beau had a bone marrow biopsy and a lumbar puncture. These tests yield 4 test results: 1.) Review of cells in spinal fluid. 2.) Review of cells in bone marrow. a. Reviewed by pathologist under a microscope.
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
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
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
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
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
To the guy who flipped me off merging on to the toll road this morning, I’m sorry that I wasn’t paying close attention to the merging lanes. You’d think after driving this route, this many times, that I’d know the
We got our dates for Philly. Yesterday I was driving, mind wandering, thinking, “Crazy to think that everything will turn on a dime when that call comes in.” And then two hours later, that call came in. Cells are in
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,
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
His room was already dark, which for 9:30pm on a summer night felt early. It had been a hard day, everyone had been crabby. He was asleep, I should leave well enough alone. But I wanted to end the night
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
When your child is diagnosed with acute lymphoblastic leukemia you hear that it’s the “good” cancer in that it’s EFS (event free survival) is upwards of 94%. And that helps you find some footing in the sinking sand because in
Beaudin’s ANC is 2000. He has not had an ANC this high since January of 2019. Any cancer parent reading this understands, 2000 ANC is *high*. We’ve been trained for the last two years to watch this number closely and
As Beaudin’s body continues to recover from the chemo and the CAR T infusion, he feels better and better. At our last clinic visit his ANC was up to 1100 which allowed Joshua and I to exchange “woot!” and then
Before this Philly circus started Joshua said he thought I would need to tap out at two weeks but could probably eek out three. I found this offensive because obviously I could do ABSOLUTELY anything I needed to forever because
Fever update: Man, watching a fever rise/fall/hold is something I will NOT miss about this circus. Of all the stresses of cancer, the waiting for symptoms to progress is a real drain. It feels like an extended fight or flight
Medical update: Last week, Beaudin received 4 days of high dose chemotherapy to kill off his healthy B-cells in order to make room for his new T-cells. He was tired, but not overly so. His appetite diminished, but really, I
There feels like so much to write and yet nothing to say. I’ve tried to write this update a couple times and find myself all over the place. There is a lot happening on the schedule and even more emotionally.