Fusion-negative Rhabdomyosarcoma: Addison’s Story

A stye or cyst seemed to be the cause of Addison’s swollen, bruised eye. But after it was removed, her surgeon began using a whole new vocabulary to talk about Addison’s condition. Her parents immediately knew the situation was serious. It turned out that Addison, 7, had a cancerous soft-tissue tumor.

A week before Halloween 2018, the area below Addison’s right eye suddenly appeared discolored. It looked like a bruise, but she told her parents, Caitlin and Daniel, that she was certain she hadn’t been hit by anything. She tried putting ice on the area, but by Halloween, the discoloration was worse.

Their pediatrician thought it was a stye and suggested warm compresses, but this proved unhelpful, and after a few days a swollen bump developed in the area. An optometrist detected a growth and sent Addison to an ophthalmologist, who called it a dermoid cyst. An MRI appeared to confirm the initial diagnosis and a minor surgery to remove the growth was scheduled for the day before Thanksgiving. While Addison waited for surgery, the bump continued to grow.

The surgery successfully removed the golf-ball sized growth, but during the post-operative review, the surgeon “immediately started using different words,” remembers Daniel. What they’d thought was a free-floating cyst was now described as a tissue-based tumor that was connected to the orbital floor. Upon review of the initial pathology reports, the doctor thought it could be a case of rhabdomyosarcoma and immediately got the family an appointment at Wills Eye Hospital, where the diagnosis was confirmed.

Rhabdomyosarcoma is a cancer of cells that normally develop into muscles. Tumors can occur anywhere in the body. Fusion-negative rhabdomyosarcomas occur most commonly in young children — common sites include the skull cavity, the face, the genital area and around the liver.

Happy-Go-Lucky, With One Exception

Three days after the diagnosis, Addison was at Children’s Hospital of Philadelphia (CHOP) to get the port implanted that would deliver her 20 rounds of weekly chemotherapy through a catheter into a vein. She also went through five weeks of daily proton therapy, a highlyRegister Today
You can help in the fight against childhood cancer.
Register
Support Us
Donate to our cause to help us reach our fundraising goal.
Donate
targeted radiation treatment that required her to be completely immobilized.

Through it all, she stayed in good spirits. “She’s an optimistic kid, pretty happy-go-lucky,” says Daniel. “At school she knows everyone, students and teachers alike. It’s much the same at CHOP. She’s embraced doctors, nurses, the support staff, as well as other patients and their families with open arms.” Not surprisingly, port access and constantly taking medications can prove difficult, “But the second it’s completed, it’s instantaneous — she’s dancing, smiling and telling stories to everyone.”

Daniel calls CHOP’s child life specialists “phenomenal” and adds that Addison loves the arts and crafts projects she does with the Hole in the Wall Gang, representatives from a program founded by actor Paul Newman to provide seriously ill children with a fun-filled experiences.

A Head-shaving Party

“She loves Disney princesses, her favorite being Rapunzel for her long blond hair,” says Daniel. “So when it came time to shave her head, we thought it was going to be a big deal.” The family organized a haircut party where multiple loved ones shaved their heads together. Following the visit to the barber, three dozen friends and family returned to Addison’s home for a party. That evening, Addison shed the hat she had put on at the barber’s.

Several times since beginning treatment, Addison has had fevers that required her to be admitted to CHOP. In early May, minor side effects from the radiation caused double vision and dry eyes. As a result, Addison needs to wear glasses, at least temporarily.

Presented by Chapman Auto Stores Her final chemotherapy is scheduled for mid-June, hopefully followed by a return to a normal schedule. Despite missing dozens of school days for treatments, with some home-schooling she is still one of the top students in her class. And her passion for dance — she takes classes in five different styles — remains stronger than the weariness, joint pain and other effects of chemotherapy. A treatment session at CHOP has a typical ending: Addison teaching her nurses the latest dance moves.