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 check for b-cells and/or cancer in his marrow, and a lumber puncture to, again, check… Continue reading HuCART: Month 3 trip to Philadelphia
Category: CAR-T Therapy
Seasonal Jammies & Month 2 Results
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 enough to build-out a holiday gift guide? I pushed through and posted it anyway and… Continue reading Seasonal Jammies & Month 2 Results
Currently: October
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 occupying ourselves with lately. To begin with, my front porch. Can you even? I am… Continue reading Currently: October
Canaries in September.
Each September the info graphics start flooding my Facebook feed. As though they finally have an excuse to scream these statistics at the top of their lungs, all my cancer mom friends fill their pages with data on childhood cancer that everyone needs to know. I'm looking at you Jess McKearney, you have brought some… Continue reading Canaries in September.
HuCART Day +28 results
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. b. Measured for minimal residual disease (MRD). 3.) Check for B-cell aplasia in the bone… Continue reading HuCART Day +28 results
HuCART Day +20: Mini golf and school.
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 they come near. After returning from the hospital Beaudin continued to improve, but wanted things… Continue reading HuCART Day +20: Mini golf and school.
HuCART Day +5: Hospital overnight and confusion.
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 to the ER. Because of the fever, low counts, and a recent CarT infusion, overnight… Continue reading HuCART Day +5: Hospital overnight and confusion.
HuCART Day +4: Headaches and an orchard.
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 markers (measured in his blood) stayed relatively low, and aside from some uncomfortable hours on… Continue reading HuCART Day +4: Headaches and an orchard.
HuCART Day -3: Weekends are for the country.
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 walking around feeling the eagerness of an explorer, I am struck that some people (a… Continue reading HuCART Day -3: Weekends are for the country.
HuCART Day -4: For the sake of the roadmap to freedom.
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 a roadmap in other people's suffering. It came to me wrapped in an overly emotional… Continue reading HuCART Day -4: For the sake of the roadmap to freedom.
The Heavy Wait 