When Beaudin was six years old, a series of fevers and hospitalizations led his doctors to deliver a diagnosis that no parent wishes to hear: I looks like leukemia. While it appeared that he was initially responding well to standard treatment, a series of relapses would soon have Beaudin’s family seeking an alternative. Beaudin has since received both CAR-T and HuCART at the Children’s Hospital of Philadelphia. Today he is 18 months cancer free!
In her own words, Beaudin’s mother Betsy shares the story of her son’s diagnosis, relapse, and the journey to CAR T-cell therapy.
In December of 2018 Beaudin, age 6, 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, the rest of the tests were coming back 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. 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, 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 11, 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! Our team in Colorado was sure that the only path for Beaudin was the standard 2 year relapse protocol.
Thankfully, I came across the Emily Whitehead Foundation webpage 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 Emily Whitehead 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!
We receive messages from families around the world with experiences similar to Beaudin’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
To search for available CAR T immunotherapy clinical trials, visit our Pediatric Cancer Clinical Trial Finder. To help us in our mission to give children around the world the opportunity to Activate the Cure to their cancer, Get Involved or Donate now.