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In July 2010, Ella’s mother had a feeling something more was wrong with Ella than just a urinary tract infection. She wrote a list of her daughter’s symptoms and presented it to the pediatrician at their follow-up visit. The doctor listened, and ran a battery of tests on the little girl. That day, a CT scan revealed a tumor on Ella’s right adrenal gland, which is located on the kidney. Ella and her mother were life-flighted to a local hospital.
The doctors were confronted with a tumor they’d never seen before. After thorough testing, the surgeons decided it was safe to remove. Soon after, her doctors determined Ella suffered from adrenocortical carcinoma (ACC), so rare that only 1 in 3.3 million children are diagnosed in the United States each year. It’s a tough diagnosis. A search of treatment options led the family to St. Jude . The hospital has become a leader in ACC research and treatment, and for 20 years, it has kept a repository of ACC data and tissue samples for research purposes. The family quickly obtained a referral.
Ella is Native American, an Oglala Lakota. Before she and her mother flew to St. Jude, Ella was part of a healing ceremony. Ella’s mother prayed the cancer would go away for good.
At St. Jude, Ella began a chemotherapy protocol that lasted several months. She finished the most intensive phase of her treatment in February 2011 and returned home, where she continued on oral chemotherapy. For months, the little girl had good checkups, but in late 2011, scans revealed her cancer had returned. Now Ella is back at St. Jude receiving radiation to the mass on her adrenal gland.
Ella’s mother admits to sometimes feeling frightened – after all, ACC carries a tough prognosis – but she trusts in her treatment team at St. Jude, and her daughter’s strength inspires her. When Ella first lost her hair, her mother shaved her hair off too in a show of solidarity.
Ella is an outgoing child who attends the St. Jude on-campus school. Her favorite color is purple, and she loves to sing and paint. Taylor Swift is her favorite musician.