‘Challenge accepted’: Sophia takes on a brain tumor

In 2023, Sophia Mordini landed the role of a lifetime. A competitive dancer, the 12-year-old would play Clara in her company’s production of “The Nutcracker.” But the performance was bittersweet: Just two weeks after the curtain fell that December, she underwent surgery to remove a very large and complex brain tumor.

‘We knew something was wrong’

Sophia’s journey had begun earlier that year, when she started experiencing debilitating headaches, which her pediatrician initially attributed to puberty. Six months later, the headaches hadn’t resolved and Sophia had lost almost 18 pounds.

“By the time she was at Nationals, her costume was falling off her body,” says her mother, Natasha. “We knew something was wrong.”

Back home in Wisconsin, Natasha pushed Sophia’s doctor for an MRI scan. When the results came back, her instincts were proven right. Sophia had a “massive” brain tumor surrounding her carotid artery, jugular vein, and the nerves that control hearing and balance, as well as facial, tongue, voice, swallowing, and shoulder function.

Because of the tumor’s location, surgeons at the family’s local children’s hospital didn’t feel comfortable removing it. “No one would touch her,” says Natasha. “They were afraid she’d end up paralyzed. That didn’t sit right with me — I wasn’t going to wait until the tumor grew and did more damage.”

Finding a second opinion and specialized care

Fortunately, Natasha had a friend who works in neurology. After doing some research, the friend recommended two children’s hospitals, including Boston Children’s. The Mordinis reached out for a second opinion. The team in the Brain Tumor Center responded quickly.

“They called us and said, ‘We can’t wait to see your daughter. We know how to fix this,’” remembers Natasha.

The family’s first visit to Boston lasted about a week, during which time they met with the Center’s co-director Dr. Lissa Baird, neurotologist Dr. Aaron Remenschneider, and otolaryngologist Dr. Anne Hseu. During that time, Dr. Remenschneider performed a biopsy of the tumor via Sophia’s ear. The tumor wasn’t malignant — but it still had to be removed.

A waiting game

When Sophia returned to Boston Children’s, it was for a 23-hour surgery with the team. Her family waited anxiously, uncertain of whether the whole tumor could be removed and which functions might be affected by the procedure. The first fear was eased when Dr. Baird reported that the surgery was a success.

“She said, ‘I know this is scary for you, but my scary part is over,’” says Natasha. “She was so calm and confident, which was reassuring.” Dr. Baird had removed almost all the tumor, except for a few small pieces that were too close to Sophia’s carotid artery to risk removing.

The next month was another waiting game as Sophia’s family watched to see if and how her function had changed. While in the hospital, she relearned how to swallow and had intensive physical and occupational therapy. It was clear that one thing hadn’t changed, though. When a nurse gave Sophia a pad of paper and pen to see if she could still write, she threw the pen in frustration.

“We felt terrible, but the nurse just joked, ‘Well, her hands work just fine!’” recalls Natasha. “Like us, she was so glad Sophia wasn’t paralyzed.”

Back in the spotlight

Following three months of proton radiation, the remainder of the tumor had shrunk, and Sophia was on the mend. It hasn’t always been easy: She has her “why me” moments and is coping some residual neck pain. Reading about other kids who have endured similar — and worse — situations has helped a bit.

So has dance. Having now returned to her passion, she hopes to teach one day. She’s also considering doing something in health care after being inspired by Dr. Baird and her own experience. Whatever is next, Natasha knows that Sophia, now 14, will go all in on it.

“She’s worked so hard to get back to where she is now,” she says. “No matter what she’s faced, she just says, ‘Challenge accepted.’”

Learn more about our Brain Tumor Center.