I wanted to get the high-level of Beau’s story in one post so that a newly diagnosed, or newly relapsed cancer, parent could have a single place to read about it. Would I like them to read every post I’ve written? Well sure, but I know how the frantic google search of a newly diagnosed mom goes and it is not a time to extrapolate the story arch from 3 years of blog posts. Here are the details, generally. I’ve tried to link as many relevant posts as possible.
Content is as follows in case you need to skip ahead:
- Pre-Diagnosis-December 2018
- Diagnosis and Frontline- January 2019-September 2019
- Relapse- December 2020
- CAR T-cell Therapy- March 2021
- HuCAR T-cell Therapy- August 2021, Boost January 2022
- Next Step, Port Removal- June 2022
If you are here because you are newly diagnosed, or newly relapsed, please don’t hesitate to reach out. I would love to chat.
In December of 2018, Beaudin, 6 years old, woke-up one morning with a high fever. It seemed out of no where. We let it ride for many days and ride it did. It was above 103 deg, on and off, more on that off, for a week. Finally, we took him to our family practice doctor. She said it was likely viral and sent us home. We checked in with our kinesiologist, got him some supplements that helped support the body during a viral illness, and agreed that if he didn’t get better we’d look at his labs. A week later he went back to school, improving. His second day back, a mom friend, who is also a nurse, texted me a picture of him from a field trip she was chaperoning and said, “Beau looks yellow, I’m worried.” Within a day or two, his fever was back and we decided to take him to get his blood work done at the local hospital, just to be safe. That afternoon, our doctor called us and told us to go immediately to the local, regional campus of the Children’s hospital with instruction that upon arrival we were not to take him into the public waiting room, but to go inside and tell the staff he was “severely neutropenic” and needed to be seen in isolation.
They took labs, performed a chest x-ray, and decided it was best to transfer to the main children’s hospital for observation. After an entire night waiting in the ER, were admitted and for 10 days Beaudin had a slew of tests run to try and understand what was happening. During that time he developed severe mouth sores and was experiencing deep bone pain, headaches and fever. None of the doctors could agree on what was causing the symptoms, despite every test at their disposal being administered. Every test that is, except for a bone marrow biopsy. For some reason the teams (cancer, hematology, infectious disease, hospitalists) didn’t think it was leukemia and so the only time the bone marrow biopsy was mentioned, it was in a Hail Mary, “We have no idea what’s going on, but we could try a bone marrow biopsy…?” kind of way. It was always mentioned with at least one doctor dissenting that it wasn’t needed. So we declined the test, at the time, not being able to fathom a needle going in to our son’s bone marrow. Gosh, how far we’ve come.
After 10 days, his blood levels started to slowly recover and the team excitedly told us we could go home and heal the rest of the way. We’d need to check-in with hematology in a couple week, because perhaps he had some severe sort of anemia, but “there is no way it’s cancer, because his marrow is recovering, and that couldn’t happen with Leukemia.” We did receive instruction to keep a close eye on fevers and return immediately if they came back.
We went home and tried to put a long month behind us and move towards healing. But Joshua and I knew something wasn’t right. The details just didn’t add up. We felt unsettled, but hopeful that perhaps this was just a wild virus (…that no one else in our household had managed to catch…)
Two weeks later, on January 16th after a week back at school, Beau spiked a fever. We took him to the hospital and they suggested we admit him until his blood cultures returned to make sure there wasn’t a bacterial infection. Because of a busy flu season there were no rooms on the general hospital floor, so they admitted us into a nice corner suite, on floor 7: Cancer/Hematology.
The next morning, in his early morning lab work, the team identified what would set our course- cancerous blasts in his peripheral blood. On January 17th, 2019, at 6 1/2 years old, Beaudin was diagnosed with Acute Lymphoblastic Leukemia.
We believe that Beaudin’s Leukemia was caused by a combination of genetic predisposition as the kindling and the flame: chronic infection from mold in the water damaged building where he attended school. I have written about that in detail here, here, and here. However, I need to go back and consolidate those posts as they were written when I still cared what people thought and I was worried about being too explicit. I will re-up them and be more direct asap, but here it is: his school had water damage, dangerous mold levels, many students and faculty were sick, they denied it, played dumb, and skirted the issue. We lost an entire community over this stance. Which has been hard and as you come to experience your own cancer story, you will see that loosing people is inevitable.
If you want to read about why understanding the CAUSE of pediatric cancer is important, start here.
Diagnosis and Frontline- January 2019-September 2019
Beaudin had favorable genetics, a low WBC count, and no disease in his cerebral spinal fluid (CSF) and thus was deemed Standard Risk. Treatment was started on the COG 9032 protocol. He was released from the hospital on Day +4 of induction after port placement surgery and a couple chemo doses.
By Day 8, his disease had reduced enough that they were confidant he would meet remission at month’s end. By Day 28, his minimal residual disease (MRD) was so low that he was thrown into the 5-year Event Free Survival (EFS) rate category of 94.6%. You can read more about the clinical significance of MRD at the end of Induction here.
During induction, on Day +6, Beaudin was hospitalized with a staph infection and while inpatient developed a blood clot in a subclavian vein. We believe the infection was acquired at the hospital during our in-patient diagnosis stay. As far as the blood clot- the first couple days of treatment included a perfect storm of PEG-L-asparaginase chemotherapy, which is known to cause blood clots, a port placement in the subclavian region, which causes inflammation from the trauma, and then the presence of leukemia, making the blood, for lack of a better term, sticky. The blood clot required 4 months of twice daily, sub-cutaneous blood thinner.
He proceeded through Frontline with little cause for concern. He did not have any severe side-effects and was never hospitalized for fever. He lost his hair as expected during the second week of Delayed Intensification. He had one hold for low counts, one week at the end of Interim Maintenance 2. At the start of maintenance, he began doing his lumbar punctures without sedation because the propofol made him feel poorly.
Relapse- December 2021
In November of 2020, at his quarterly lumbar puncture, 3 cancerous white blood cells (WBC) were found in his spinal fluid sample. Because of the low number, his team wanted to allow another sample, one month later, to determine if this was a proper relapse. Prior to 2020, per COG (Children’s Oncology Group) guidelines, a relapse was only called if the spinal fluid sample was above 5 cancerous WBC, but in 2020 it was amended to define a relapse as two consecutive cancer positive results of any number.
Although we did not confirm the relapse until December, the official timeline was November, 20 months into 26 months of treatment, at the beginning of cycle 6 of maintenance, Beaudin relapsed in his spinal fluid- this is referred to as a “CSF-Only Relapse”. Because he was more than 18 months into treatment, it was deemed a “Late CSF-Only Relapse” which has, mildly, better outcomes. He did not have spinal fluid involvement at diagnosis, and had had clear spinal fluid samples leading up to this relapse. Even with relapse, he has not shown disease in his marrow since diagnosis. A “CSF-Only Relapse” happens in only 4-5% of relapse patients, relapse occurring in 20% of diagnosed kids. It’s a damn rare way to relapse.
Our team put forth the standard relapse chemo regimen which is a modified version of the initial treatment: heavy hitting up front, followed by 2 years of follow-up chemotherapy as well as cranial radiation. That success rate hovers around 70%. I found another option online-CAR T-cell therapy and even better, a trial at the Children’s Hospital of Philadelphia for CAR T-cell therapy in CSF-only relapses. Our team said it was worth a shot. Less toxicity, and far less treatment. Relapse therapy is far less straightforward than initial diagnosis, with the path forward much less clear.
CAR T-cell Therapy- March 2021
Beaudin had his t-cell aphaeresis locally in Denver in January of 2021 and the cells were sent to New Jersey for production. While his CAR T-cells were being manufactured, Beaudin did bridge chemotherapy of intrathecal triple lumbar punctures bi-monthly, and continued his maintenance daily, at-home, chemotherapy regimen of 6MP and Methotrexate. During this time, Beaudin had his last cancer positive spinal fluid sample, at the end of January 2021. In the spring of 2021, we spent 7 weeks in Philadelphia for the CAR T- cell trial. On March 23rd, Beaudin was transfused with his CAR T-cells. He had a mild reaction including a terrible headache around day 4. He was not hospitalized. By Day 28, he had early b-cell return and the treatment was considered unsuccessful.
We decided to move forward with another CAR T-cell trial, working with a humanized version of the t-cells, that had shown success in children that had not responded to the original CAR T-cell product. He had his t-cell aphaeresis, again locally, in June 2021. He did not have any bridge chemotherapy during this time, though we continued to check his spinal fluid every couple of weeks. It remained free of disease.
HuCAR T-cell Therapy- August 2022
We returned to Philadelphia for another 7 weeks in August. He had his HuCAR T-cell infusion at the end of August. He had a more significant reaction, requiring hospitalization for 24 hours. Overall, still a simple process. He was able to hold on to those HuCAR T-cells for 4 months, until December 2021 when they started to fall off. We returned to Philadelphia for 3 weeks in January of 2022 and Beaudin got a “boost” of his HuCAR T cells. This boost did not hold and at Day 28, post boost, he has full b-cell return. We chose to take a “wait and watch” approach instead of moving forward with Bone Marrow Transplant as recommended by his team.
Next Step, Port Removal- June 2022
Beaudin has been “no evidence of disease (NED)” since his last positive spinal fluid sample in January of 2021. He has continued to be NGS/Adaptive negative in his bone marrow the entire time.
As of his last BMA/LP in May 2021, he remains cancer free.
Beaudin had his port removed after 1200+days in early June 2022.
Last updated: June 8, 2022.