No backing down: Sophia takes on a rare form of liver cancer

Sophia LaBorde is headstrong and “doesn’t back down,” says her mother, Alicia. So last year when Sophia had some gastrointestinal discomfort and a low appetite, she asked her parents to bring her to her local pediatrician. And when test after test ruled out more common culprits — lactose intolerance, heartburn, even thyroid disease — she pushed for more.

“We’ve always taught her to listen to her body,” explains Alicia. “She was adamant that something was wrong.”

Eventually, an MRI scan proved her right, but it wasn’t an answer she and her family wanted. Sophia, then 12, had liver cancer, which had spread to her lung and lymph nodes.

“At first she panicked and worried like anyone would,” remembers Alicia. “Then she calmed down and started asking the doctor questions. She has a strength and grace I’ve never seen before.”

Making connections

The size and location of the cancer — an extremely rare, aggressive type of liver cancer called fibrolamellar hepatocellular carcinoma — initially made surgery impossible. Instead, Sophia underwent chemotherapy for several months at a cancer center near her home in western New York, overseen by pediatric oncologist Dr. Ajay Gupta.

When the tumor had shrunk enough, Dr. Gupta introduced Sophia and her family to the team in the Liver Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Unbeknownst to the LaBordes, he had already been consulting with the center’s director, Dr. Allison (“Alli”) O’Neill, about Sophia’s case. Dr. O’Neill and her colleague, surgeon Dr. Heung Bae Kim, believed surgery was now an option.

Because fibrolamellar hepatocellular carcinoma is so rare — it affects about 1 in 5 million people — Alicia and her husband, Derrick, knew that Sophia would be in good hands. “So few doctors know about this cancer,” says Alicia. “We’re so glad Dr. Gupta connected us with Dr. O’Neill and Dr. Kim.”

Kicking cancer’s butt

In December 2022, Dr. Kim removed the tumor from most of Sophia’s liver; ablation by radiologist Dr. Raja Shaikh destroyed the remainder of the lesions visualized in the liver. Since then, all of her liver scans have come back stable — but Dr. Kim has told her that he’ll be her surgeon for life should she need him again in the future. And Sophia has formed a deep bond with Dr. O’Neill. “She loves Alli and wants to visit her in Boston,” says Alicia, although the family is hopeful she won’t have to return for treatment.

Back home in New York, Sophia is receiving targeted therapy and immunotherapy to treat the nodules remaining in her lungs; so far, the effects have been positive. Like anyone in her situation, she has hard days, especially when she sees one of her friends she’s met through support groups relapse or get worse. “When one of them hurts, they all hurt,” says Alicia. One way she’s been coping: making bracelets to raise money for other families dealing with cancer.

But Sophia is confident and spunky, too. “She’s going to kick cancer’s butt and do great things,” says her mom. On her list: Move to Boston and become a pediatric oncologist — just like her friend Alli.

Learn more about the Liver Tumor Center or make an appointment.