When Cadence May was born in 2012, her parents noticed a swollen area on her right forearm. At first, doctors in the May family's hometown of Louisville, Kentucky told them not to worry about it, but over time, the lump grew. When Cadence was 2, it was diagnosed as a desmoid tumor, a rare type of tumor that does not spread around the body but can grow aggressively where it originates.
As I describe in a new feature story in Stanford Medicine magazine, desmoid tumors have traditionally been hard to treat in kids. Pediatric desmoids don't respond well to radiation, and radiation exposure carries a risk of later cancer. Surgery, even if the margins of the tissue removed look "clean," has only a 50 percent success rate, and cutting out Cadence's desmoid would have permanently impaired nerves and muscles in her arm and hand. Her doctors tried chemotherapy, but the tumor kept growing. They tried "watching and waiting," but the tumor grew more.
Finally, the May family was referred to Lucile Packard Children's Hospital Stanford, where radiologist Pejman Ghanouni, MD, PhD, and his team had recently received permission to offer a treatment called high-intensity focused ultrasound to children with desmoids. Focused ultrasound is non-invasive, with no cutting, no drug side effects, and no radiation; instead, the ultrasound waves are precisely focused to cook the problem tissue, sort of like using a magnifying glass to burn a hole in a leaf.
Cadence was the youngest child in the world ever to receive focused ultrasound when she had her first treatment at age 3 in April 2016. The doctors were able to kill the core of the tumor, reducing its total size, and Cadence was acting like herself again almost immediately. From my story:
'The very next day, she was playing on the playground like nothing had ever happened,' [Cadence's mother] Annette May says. That day Cadence had no trouble swinging from the monkey bars using both arms, her mom says.
Seeing how quickly Cadence bounced back increased the confidence Ghanouni and [orthopedic surgeon Raffi Avedian, MD] had in what they were doing. 'What we’re learning from desmoids can translate to sarcomas and other tumors as well,' Ghanouni says.
Cadence's desmoid is still growing slowly, but because the treatment is non-invasive, she can return to Stanford for as many more treatments as she needs to keep it in check. The Stanford team is also figuring out how to use the technology to help children with many other types of tumors, including conditions that affect the bones and the brain. In a few weeks, when Packard Children's opens a large new building, the expanded facility will include dedicated pediatric focused ultrasound equipment.
Best of all, Cadence still has full use of her arm. As my story describes, this summer she used both arms to learn to swim the backstroke.
Previously: Stanford Medicine magazine puts spotlight on pediatric care, Ultrasound has its day -- and evangelists galore and Strong-arm tactic: Saving toddler's limb from amputation
Illustration by Terry Allen
