It’s hard to convey, a CAR T essay

Today the kids are back at school. Every last one of them. Praise Be.

If you’ve been here a minute you know that we have been here, there, and everywhere as far as school goes. Starting at one school, leaving because of mold, homeschooling, then relapsing and falling into the gracious hands of our local public school, then leaving public school again because COVID and T-cells don’t mix, then un-schooling, and then, now, deciding the best path forward is a school one.

It’s been a ride.

Alas, the kids are in school at a beautiful private school in our area and we are all adjusting again to proper bedtimes, packed lunches, and, for me, the sound of silence. Yesterday morning, my first alone, I rejoiced and grieved how blissfully alone I was.

Next month we are going to a fundraiser in Philadelphia for the Emily Whitehead Foundation (EWF) who I mentioned before is the non-profit that helped us get synced up with CAR T therapy. As part of our attendance, we were asked to share Beau’s CAR T story.

Easy, I thought, because I am never at a loss for words. But the days have come and gone and the reminder emails have started to stack- up and I just couldn’t find the time, or gumption, to do it. This morning I vowed that with my free time I would just sit down and do the dang write-up!

What did this look like? Well, it looked like me getting the kids to school, pulling the shades closed and laying in my bed for 30 minutes and wondering if there was even a point of ever writing again ever for the rest of my life. After that moved through me, I decided I would set a timer for 15 minutes and just write whatever I could and then I would do this 15-minutes again tomorrow. As is most often the case, once I sat down the story poured out and before the timer expired I had finished the essay. (see below)

Now, I am finished and tired.

It’s hard to write 750 words the encapsulate the last 4 years of trauma. It’s no wonder I’ve been avoiding it.

It’d hard to convey that it felt so much like a normal cold and because it wasn’t, nothing will ever feel like a normal cold ever again.

It’d hard to convey that we knew things were complicated, but he had ALL THE BEST PROGNOSIS’ and so how could he possibly relapse!?

It’s hard to convey the despair I felt lying in that condo on the beach, writing the email to the founder of the EWF.

It’s hard to convey that while CAR T was a better option, it was still an option that upended our lives and made everyone in our family come out the other side looking and feeling rode hard and put away wet.

It’s hard to convey that I am only just now starting to read back through old posts, like this one that I sent to another CAR T parent this morning, and realize how much trauma our family holds.

The other day I shared Beau’s 12-month results with some immediate family. The results are always bit confusing to interpret because while they are clear, they are confounding. They are hopeful, but not definite.

“So, does the latest report mean we are done with the cancer dance?” the reply read.

Are we done? I wondered to myself.

That is hard to convey, but the short answer is, “never.”

Beaudin’s CAR T story-

In December of 2018 Beaudin got sick with what we assumed was a “bad cold.” After weeks of relentless fevers our pediatrician suggested some routine bloodwork to rule things out. When she called us with the results she told us to head immediately to the children’s hospital, it looked like Leukemia. As all parents say, we couldn’t believe it. Beaudin had always been a healthy kid and had never had any medical complexities. For two weeks we stayed in the hospital as the team ran every test there was to try and figure out what was going on. Every test except a bone marrow biopsy. The trouble was that the tests were coming back somewhat normal, and after two weeks his blood counts started to recover. The team sent us home with orders to come back if the fever returned and we counted our blessings that it was nothing more.  But it was more. In early January 2019 Beaudin spiked another high fever and his CBC had yet again tanked. He was admitted to the Children’s Hospital of Colorado for observation. Because it was flu season all the floors were full in the general illness wing so we were placed in an extra room on the Hematology/Oncology floor. The very next morning the doctors came into our room after the morning labs had been read and let us know that it was in fact Leukemia, blasts finally showing in the peripheral blood. 

Over the next 20 months we followed the standard treatment for Acute Lymphoblastic Leukemia. And though every single thing felt upside down in our lives, Beaudin’s actual cancer treatment was very straightforward. He was standard-risk, had all the favorable genetics, and by Day 28 of Induction was MRD negative. He did not have any prolonged hospital stays (aside from one early one for a line infection), no adverse reactions, or secondary conditions. Again, it wasn’t easy, but it was by the book.  We continued on the slow path through Maintenance and in the fall of 2020, with End of Treatment a mere 5 months away, we started to discuss port removal. 

Everything changed on November 11th, 2020, when a routine quarterly lumbar puncture revealed abnormal white blood cells in his spinal fluid. Just like diagnosis, but perhaps more so, we were floored. How could this be? We were doing everything right, and he was responding exactly as they wanted! His team suggested we do a follow-up test the next month to confirm, and then dive into relapse protocol treatment- starting the clock over with another 2 years of chemotherapy, this time more intense, and the addition of cranial radiation.

We had been through so much in the previous 2 years and the thought of starting over felt insurmountable. Since the doctors had given us one month before starting again, we decided to go on one last family vacation before another uphill battle. We spent the month on the beach in Florida wondering how this was all going to end. Diagnosis is one thing, but relapse is another. During that “vacation”, I scoured the internet trying to understand our options. There HAD to be another way to handle cancer that wasn’t just more chemotherapy at more toxic levels!

Thankfully, I came across the Emily Whitehead Foundation (EWF) website and was soon diving deep into learning all I could about CAR T therapy. I emailed Tom Whitehead one night close to midnight, desperate for help, and had a personal reply from him by morning. With the help of the EWF team, we were able to get Beaudin signed up for a trial at the Children’s Hospital of Philadelphia (CHOP) specifically for “CNS-only relapse patients.”

Beaudin received his CAR T cells in March of 2021, but unfortunately by Day 28 they had begun to fade. Despite their disappearance, his cancer did not return. Based on the lack of persistence of the T cells, the team at CHOP suggested Beaudin move to a different study to receive T cells again. In August of 2021, Beaudin received his HuCAR T cells. Those cells stuck around for 4 glorious months before beginning to fade in early 2022. We chose to take a ‘watchful waiting’ approach as to what to do next. 

Today Beaudin is 18 months cancer-free and living his best life. He is an avid speed cuber (think Rubik Cube) and also loves baseball and his dog Hatchet. There is nothing easy about relapse, but the option to pursue CAR T therapy has been an absolute gift.

We are so thankful for the EWF foundation and for all the work being done to develop CAR T therapy. Children like Beaudin deserve a less toxic way to be healed and whole and we are hopeful that CAR T is it! 

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