Surgical Oncology Center

Amari and Rhabdomyosarcoma

Specialized Sarcoma Care Helps Amari

Before becoming a patient at Cincinnati Children's, Amari had already completed 14 chemotherapy cycles back home in Indiana.

She was 3 years old when doctors first diagnosed her with vaginal rhabdomyosarcoma, a rare form of cancer which mostly affects children between the ages of 1 and 5.

Her parents, Rebecca and Eric, started Amari’s chemotherapy treatment immediately. Thankfully, the tumor eventually began to shrink and the conversation turned to surgery and how to best remove what was left of the cancer.

Given the rarity and location of the cancer, doctors in Indiana recommended Cincinnati Children’s as the best place to continue Amari's care and contacted the experts in our Sarcoma Program. 

Rhabdomyosarcoma is categorized as a soft tissue sarcoma, or cancer that affects the body’s musculoskeletal system. It can develop in different parts of the body, such as the head and neck, the eye socket, the arm or leg muscles, or, in the case of Amari, at the entrance to the vagina. Treatment may involve surgery, radiation therapy and chemotherapy—either alone or in combination.

Rebecca was eager to learn more about the history of both the Cincinnati Children’s program and patient outcomes. When Amari had been first diagnosed, Rebecca went online and searched social media hoping to find other patients with rhabdomyosarcoma. 

“I was unable to find anyone with a story,” she said. “Then we were introduced to Dr. Dasgupta, who felt she would be able to explore options for surgery.” 

Specialization for Ultra-Rare Cancers at Cincinnati Children’s

Vaginal rhabdomyosarcoma is so uncommon that it’s considered an ultra-rare cancer, says Roshni Dasgupta, MD, MPH, a pediatric surgeon in Cincinnati Children’s Division of Pediatric General and Thoracic Surgery who treated Amari.

In all of North America, she said, there are fewer than 500 cases of rhabdomyosarcoma (RMS) a year. Of those cases, around 10 are vaginal rhabdomyosarcomas. Dr. Dasgupta further estimates that of those 10, she and her fellow providers at Cincinnati Children’s treat two or three.

“We see a higher volume of patients with this kind of cancer than anywhere else in the country. That means we have the expertise needed to treat it.” she said. 

“We've done this many times before. It just shows that Cincinnati Children’s is a great home for any patient with RMS because of our already developed expertise in this rare tumor.”

Dr. Dasgupta highlights the Cincinnati Children’s Sarcoma Program, a national leader in providing advanced therapies for patients with tumors of the bone and soft tissues. 

“Our oncologists within the program specialize in treating sarcomas, not just in pediatric oncology,” she says. “Plus, we work in tandem with one another—oncologists, radiation oncologists and surgical oncologists—to ensure the best treatment possible for kids with these kinds of ultra-rare cancers.”

A Multidisciplinary Approach to Amari’s Care

Dr. Dasgupta and her colleagues discussed Amari’s cancer and possible treatment options, then proposed their recommendation: performing an exploratory surgery first, followed by radiation therapy, if necessary. Rebecca and Eric agreed.

During the surgery, Dr. Dasgupta removed all the tumor in the vagina, but due to the involvement of tissues around the vagina, the team advised radiation therapy at the Proton Therapy Center to ensure Amari’s disease was completely gone.

Cincinnati Children’s is one of only a few pediatric hospitals in the country to offer proton therapy — a form of radiation therapy delivering precise radiation to the tumor while reducing damage to surrounding tissues.

For six weeks, while Amari received radiation therapy and chemotherapy treatments, Rebecca and Eric lived with her in an apartment near Cincinnati Children’s Liberty Campus operated by the Bold and Brave Kid’s Foundation. The couple’s other two children, ages 6 and 8, stayed home with their grandparents.

While the distance was only about three-and-a-half hours, the separation was hard on the family. Still, “getting Amari treatment at Cincinnati Children’s was something we felt was 100% something we had to do for her survival, and it was nice to know we were in good hands,” Rebecca said. 

She recalls two Child Life Specialists, in particular, who always made Amari smile. 

“They knew what would make her happy or the perfect little thing to give her or what to play with her when she was finished with treatment.”

Experience to Help Future Patients

Roughly a year after her diagnosis, Amari is now back home, playing with her brother and sister and getting ready to start preschool in the fall. Recently, she got to ring the bell signifying she was finished with treatment and officially in remission from cancer.

Helping Amari reach that milestone, said Dr. Dasgupta, is a testament to Cincinnati Children's expertise in treating ultra-rare forms of sarcoma. 

"At Cincinnati Children's, we have a wealth of experience in areas of ultra-rare cancer research and treatment," she said. "We work together as a multidisciplinary team to provide the kind of specialized sarcoma care that really can't be done anywhere else in the country."

As a physician-scientist, Dr. Dasgupta runs many national and international clinical trials related to the disease that measure the safety and efficacy of treatments. She’s also a member of the INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT), a researcher-created effort which brings together pediatric partner hospitals from around the world to discuss best practices and form a consensus around sarcoma treatment guidelines.

By collaborating with other pediatric oncologists who specialize in diagnosing and treating rare forms of sarcoma, Dr. Dasgupta and her colleagues can expand the number of patient cases they can see and learn from to help guide future treatments. 

"This is really important because if the United States only sees 10 of these cases a year, how are we ever going to study it?" Dr. Dasgupta said. "We partner with European sites that do pediatric sarcoma research to compile our data together."

If Europe sees 15 of these cases a year, for example, that gives INSTRuCT a larger pool of 25 patients to study. Now that they've finished developing consensus around treatment guidelines, the group is conducting studies that examine how certain interventions affect long-term patient outcomes.

"It's exciting that we can now say we're working on what's next," Dr. Dasgupta said.

More data. More research. More hope for future breakthroughs to help patients like Amari.

(Published May 2025)