Hello friends,
Betsy Larrabee’s son Beau is fourteen and cancer-free, five years after CAR T-cell therapy. When she told David and me, I got goosebumps, even though I already knew that part of her story.
When they were making these decisions, they had no way of knowing Beau would be cancer-free five years later.
When Beau’s leukemia relapsed at eight, his doctors didn’t agree on what to do next. Betsy started searching for other options and found a clinical trial in Philadelphia. To pursue it, one parent would have to go with Beau while the other stayed in Colorado with their two younger children.
What followed was eighteen months and three CAR-T infusions. Betsy spoke with us about making those decisions for her son while also trying to care for her marriage and their two other children. At every step, they had to decide what to do before they could know how it would turn out.
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Questions from this episode
How did Betsy find a CAR-T clinical trial for her son?
After Beau’s leukemia relapsed, Betsy found the Emily Whitehead Foundation during a late-night search. She emailed Emily’s father, Tom, who replied three hours later with information about a trial and whom to contact.
What did participating in the trial mean for the family?
Pursuing treatment in Philadelphia meant maintaining two households, arranging childcare, and taking turns being away from their other children in Colorado. Betsy describes the practical and emotional demands of treatment alongside the uncertainty of whether it would work.
What does life look like five years after CAR-T?
Beau is fourteen and cancer-free. Betsy speaks about learning to live with uncertainty and, through her writing at The Heavy Wait, helping other parents understand what clinical trial life can involve.
If someone comes to mind who would value hearing Betsy’s experience, please send this episode their way.
If someone comes to mind who should hear this episode, please send it their way.
Onward,
Timothy Wheeler
Co-host, Before the Cure
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