CHARLOTTE, N.C. — There is a unique radiation treatment that is helping children battle rare cancers with minimal side effects, but it requires a specialized lead-lined room to protect families and caregivers from that radiation.
There are only 20 rooms in the U.S., and one of them just opened in Charlotte at Levine Children's Hospital thanks to a $1 million grant from the Isabella Santos Foundation.
Isabella Santos was diagnosed with a rare form of pediatric cancer called neuroblastoma at 2 years old. During her short life, she underwent chemotherapy and radiation and took part in clinical trials.
One of the treatments at the end of her life was MIBG therapy.
Isabella's mother, Erin Santos, said the treatment helped her daughter without causing the same pain and side effects that other treatments did.
"It was nice to have a treatment for once that wasn't painful for her and didn't make her so sick," Erin Santos said.
Isabella Santos passed away when she was 7 years old.
Through the Isabella Santos Foundation, her family has continued her legacy in various endeavors across Charlotte, including the creation of the first MIBG therapy room at Levine.
MIBG is like a form of liquid radiation administered directly through an IV, according to Dr. Javier Oesterheld, chief of the Division of Pediatric Cancer and Blood Disorders at Levine Children's Hospital.
While every patient is different, the average time spent in the room is about two days.
"We use it for neuroblastoma, pheochromocytoma and paraganglioma," Oesterheld said. "This, specifically, treats those cancer cells without actually treating the rest of the cells in the body."
When Isabella Santos was undergoing treatment, the closest MIBG therapy room was in Philadelphia.
Erin Santos said it was outdated. She slept on a bed in the same room as her daughter during treatment, which means she may have been exposed to high levels of radiation.
The new state-of-the-art MIBG therapy suite at Levine Children's Hospital features a separate adjoining room for parents, so they can safely remain close to their children without receiving unnecessary radiation.
It also features advanced audiovisual technology to keep them connected.
"You can actually see your child from another room," Oesterheld said. "They can talk to each other. They can play video games together."
It also includes a ceiling decked out with glow-in-the-dark stars and some of Isabella Santos's own artwork. Oesterheld said Levine Children's Hospital has already treated one patient in the MIBG therapy room and they are prepared to help more.
The Isabella Santos Foundation recently signed a five-year, $5 million commitment to build a rare and solid tumor program in Charlotte, which will be one of the first in the nation. The foundation's next event is a 5K/10K and 1-mile fun run on Sept. 28 in Ballantyne Corporate Park.
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