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Following a devastating diagnosis, Tommie finds new hope

In 2018, four-year-old Thomasina “Tommie” DeSantis was diagnosed with high-risk neuroblastoma, a rare and aggressive form of pediatric cancer.

The news shattered her family, forcing them to endure what no family ever should: two grueling surgeries, countless rounds of chemotherapy and an arduous recovery that continues to this day.

But if such a traumatic ordeal could possibly have a bright side, Tommie found it at the New York Proton Center. Her treatment went remarkably smoothly, with no pain and—other than being required to lie still for each hour-long session—minimum discomfort.

Most importantly, despite undergoing two daily radiation sessions to multiple sites, Tommie suffered no significant side-effects from treatment. It was a dramatic and welcomed contrast to her prior chemotherapy treatments, which had taken a truly punishing toll on her body and spirit.

Referred by MSK to “the very best”

Tommie—who has since been dubbed “Tommie Tough” for her remarkable resilience—began her cancer journey at UPMC Children’s Hospital of Pittsburgh. Following several months of treatment there, her family sought out a second opinion that ultimately landed them at Memorial Sloan Kettering (MSK) in New York City. It’s one of the New York Proton Center’s three partner hospitals and one of the few medical centers in the country with a dedicated neuroblastoma practice.

 

Tommie, now a six-year-old first grader, candidly and somewhat despairingly recounts her chemotherapy sessions at MSK:

 

“It hurt,” Tommie says. “During the middle of it, the IV in my leg would start burning and my leg would cramp up. It was really painful.”

 

According her mother, Bevin, it was the medical staff at MSK that recommended Tommie seek treatment at the New York Proton Center. The reason:

 

“They told us you guys at New York Proton Center were the best.”

A community of caregivers

Neuroblastoma is the most common pediatric tumor treated at New York Proton Center, making it a natural choice for Tommie’s treatment.

 

Her proton therapy was overseen by Dr. Suzanne Wolden, who also serves as MSK’s Director of Pediatric Radiation Oncology. But it wasn’t just the doctors and clinicians who left such a positive impression on Tommie’s family. Bevin vividly recalls how every member of the “amazing” staff at NYPC welcomed and accommodated Tommie with gestures large and small: setting her up in the playroom, sitting her down with a child life specialist—a “great session,” according to Bevin—and even letting her select which music to play during her treatments.

 

“Everyone was really nice,” says Tommie. “I really liked them.”

 

That sentiment was mutual: “Tommie is so inspiring because of her great attitude and big smile,” said Dr. Wolden. “We were all so proud of her. And she was so proud of herself for staying still during treatment and tolerating everything so well.”

 

Because her proton therapy had virtually no adverse effects, Tommie could keep up with her homework and her many outside activities, including dance lessons, cooking classes and gymnastics. Between treatments, she and her parents were also able to enjoy their spare time in New York City. They shopped at the American Girl Store, visited the zoo and took long walks in Central Park.

 

When Tommie’s proton therapy treatment ended, the staff at NYPC gathered to mark the occasion, clapping and cheering. Tommie was presented with a Barbie doll and—as has become custom at the center—rang a bell in celebration and gratitude.

How can we help?

Want to find out if proton therapy might be a good fit for you or your patient? Call us at 833-NYPROTON (833-697-7686) or fill out the appropriate form below.