Relapsed Rhabdomyosarcoma: Ella’s Story

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Eager to talk, question and explain, Ella, 7, has an engaging personality. After a cancerous mass was found in Ella’s abdomen, and then another in her lungs, she’s on a treatment plan that isn’t getting in the way of her being a happy, active kid.

Ella In May 2016, Ella began complaining about a pain in her side. Her parents took her to the Children's Hospital of Philadelphia Urgent Care in King of Prussia, Pa. “We went in for an ultrasound to see if she had kidney stones,” Karen recalls. What they found, though, was a mass in her abdomen.

Ella was admitted to CHOP, and a barrage of procedures quickly followed: bone marrow biopsy, PET scan, CT scan, MRI. About a week after the ultrasound, there was a diagnosis of rhabdomyosarcoma, a rare disease in which cancerous cells form a mass in muscle tissue.

“We were just in shock,” says her father, Ron. “We didn’t know what to think.”

“She played in a soccer game just a few days before!” Karen adds.

The next day Ella had her first chemotherapy treatment. After the family left the hospital, Ella continued on weekly chemo for nine months. Halfway through that treatment plan, she underwent 28 rounds of radiation. She received both proton therapy — which uses a highly precise beam to target radiation directly at a tumor site — and full-abdomen radiation. On Sept. 14, 2016, Ella was ready for surgery to remove her shrunken tumor, and the procedure went well.

Seven months later, Ella’s care team told her she was officially in remission.

Rhabdomyosarcoma, now in her lungs

A year later, however, her parents were alarmed by another problem: Ella’s breathing was a little faster then usual. They again headed to the CHOP Urgent Care in King of Prussia, where a chest X-ray revealed her left lung was filled with fluid. The family was immediately put into an ambulance for a trip to the Emergency Department on CHOP’s Main Campus. Tests revealed the cancer had metastasized to her lungs.

Doctors inserted a chest tube to release the fluid, landing Ella in the Pediatric Intensive Care Unit. She was then transferred to the Oncology Unit and began chemo. Once again, she endured weekly chemotherapy for months on end — and fortunately, once again, she has responded very well to treatment.

Dancing, bicycles and hermit crabs

During her first round of treatment, Ella had a hard time because the radiation targeted her abdomen. She was losing weight, and so a nasogastric (NG) tube was inserted through her nose into her stomach to deliver nutrition. This didn’t stop her from one of her favorite hobbies: using a popular app to make short music videos of herself singing and dancing. “The nurse would say, ‘I’ll bet you’re the only kid with an NG tube on!’” Karen laughs. “She loves all her nurses at CHOP.”

Allergic to dogs and cats, Ella has put in a request for a pet pig, and she already takes care of two hermit crabs, Olivia and Charlotte. She likes to draw, play in the park, ride her bike and attend her Brownies group. In the summer of 2017 the family went to Disney World, which was great except for one flaw: “I didn’t have a very good birthday last year,” Ella explains, “because we went home from Disney on my birthday!”

"You’d never know there was anything wrong,” says Ron. “She never wants to stop playing. We have to tell her to come in.” Karen marvels at her daughter’s strength: “I cannot possibly imagine being in her shoes. When they asked her to rate her pain on a scale of 1 to 10, she always gave a low number — although you knew she was struggling. She’s the strongest little girl in the world.”

Giving back

Ella was a Patient Ambassador for the 2018 Parkway Run & Walk, CHOP’s largest fundraiser for pediatric cancer research and care. The goal of the Parkway Run is to create a future where no child is sidelined by a cancer diagnosis.

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