Zofia G. | 2026 All-Star | Connecticut Children's Foundation

A Disease with No Name: Zofia’s Story

In January 2024, Edyta noticed something frightening about her seven-year-old daughter Zofia. One of Zofia’s eyes was protruding. She took her straight to Connecticut Children’s Emergency Department (ED) where, within hours, she learned that a tumor was growing behind Zofia’s right eye.

The following evening, she underwent emergency surgery and Connecticut Children’s pediatric neurosurgeon David Hersh, MD, painstakingly removed the tumor. The surgery was a success and, remarkably, Zofia did not lose any eyesight from the procedure. But this was only the beginning.

More tumors—and growing

Over the following months, extensive imaging revealed something that no parent is ever prepared to hear: Zofia had tumors in multiple places in her body. And they were growing. Some of the tumors were in her hip and femur. Others were vascular bone tumors, scattered throughout her body, likely present before the tumor behind her eye was discovered.

Treatment, but still no definite diagnosis

As hematologist-oncologist Andrea Orsey, MD and hematologist-oncologist Michael Isakoff, MD, Division Head, Connecticut Children’s Center for Cancer & Blood Disorders, worked to understand the full picture, they faced a daunting reality. Despite biopsies at both Connecticut Children’s and Boston Children’s, no one could definitively identify the type of tumors Zofia had.

Tumors begin to shrink

What followed was a period of trial and error. Zofia began chemotherapy, but progress was slow at first. For nine months, scans showed little improvement. She asked a heartbreaking question of her mother: “Why do I have to do this?”

Then, finally, there was movement in the right direction. The tumors began to shrink. Today, PET scans show about 15 percent of disease remaining.

Treatment to protect her bones

Along the way, treatment brought new challenges. Zofia developed dangerously low calcium and phosphorus levels from zoledronate therapy (a medication used for certain bone tumors and bone fragility). Her blood mineral levels were managed by endocrinologist Nancy Dunbar, MD, Director of the Bone and Mineral Disorders Program.

Orthopedic oncologist Adam Lindsay, MD, inserted a rod in her femur to prevent the bone from breaking. The rod can be removed when her cancer treatment ends. She used crutches to get around and needed a stroller during a special trip to see Taylor Swift in concert.

Powering through months of chemotherapy and radiation

Today, Zofia is nine years old and still receiving treatment—oral chemotherapy and radiation sessions five days a week. Infusion chemotherapy will resume after she completes her radiation treatments. She is closely monitored by a multidisciplinary team at Connecticut Children’s that includes orthopedics, cardiology, endocrinology, physical therapy, and psychology.

She’s feeling great. She has a bubbly personality, and the illness didn’t take that away,”
Edyta, Zofia's Mom

“We are grateful that the current regimen is working, so we’re hopeful that this will continue and she will be in remission soon.”

From crutches to dancing and skiing

For a while, Zofia used crutches to get around. During a special trip to see Taylor Swift in concert, she even needed a stroller. But as her strength returned, so did her mobility.

Not only is Zofia walking independently now, she’s dancing again—including in her dance school’s holiday recital. Even a skiing trip—albeit on the bunny hill—was a success.

She’s also a member of Team Impact with the Trinity College women’s hockey team and enjoys attending the games with her older sister who is often by Zofia’s side during clinic visits for chemotherapy infusions.

Back to her old spunky self again

After everything she has endured—18 months of chemotherapy and 25 rounds of radiation, with another 25 underway—Zofia is back to being herself. “She’s gotten to her old spunky self after she’s gone through so much,” Edyta said.