Beating a one-in-a-million cancer

Synovial sarcoma is a rare and aggressive form of soft tissue cancer. Out of a million people, only one or two are diagnosed with it every year in the United States. In 2021, nine-year-old Luca became one of them.

In the fall of 2020, Luca’s parents noticed that he was having trouble extending his right arm and throwing a ball. What followed were months of doctor’s appointments, MRIs and surgery to treat what initially was thought to be nothing more serious than bursitis, a buildup of fluid in his arm. 

Then came the diagnosis no parent ever wants to hear. The abnormal cells found during Luca’s surgery had tested positive for synovial sarcoma. “I just fell apart,” said Luca’s mom, Anna Maria. “I called my husband to come get me at work.”

7 rounds of chemotherapy, 36 sessions of radiation and a 4-hour surgery

Because synovial sarcoma is so rare, there are few oncologists who have experience treating it. Fortunately for Luca, one of those oncologists is Michael Isakoff, MD, Director of the Sarcoma Program at Connecticut Children’s Center for Cancer & Blood Disorders. Luca’s aunt, a physician assistant at Connecticut Children’s, urged Luca’s dad, Marco, to give Dr. Isakoff a call.

The following week, Luca was admitted to Connecticut Children’s for surgery to insert a chemotherapy port and then an immediate trip to the 8th floor for his first round of chemotherapy. Every round meant another four-day stay at the hospital. After the fifth round of chemotherapy, Luca began six weeks of daily radiation sessions on his arm in preparation for surgery to remove the tumor. The surgery lasted four hours, as orthopedic oncologist Adam Lindsay, MD, painstakingly worked to preserve the surrounding nerves and Luca’s arm and hand function. After that, it was back to chemotherapy and radiation to kill off any remaining cancer cells. All told, Luca endured eight months of grueling chemotherapy and radiation treatments.

Today, Luca is a healthy, thriving seventh grader

After months of logging into his schoolwork from home or a hospital room, Luca is back in the classroom, where he is an honors student. His favorite subject is science and he even has aspirations to one day work in the radiology department at Connecticut Children’s. He’s regained about 80 percent use of his right arm, allowing him to participate in after-school sports clubs. He’s also a big hockey fan.

His care at Connecticut Children’s is ongoing. He sees Dr. Isakoff and Dr. Lindsay every three and six months, respectively. He works with an occupational therapist to rehabilitate his arm. And because the chemotherapy drug he received, doxorubicin, can affect the heart, he meets with pediatric cardiologist Olga Toro-Salazar, MD, every year to monitor his heart health.

“When he was first diagnosed, he felt like, ‘Well, I’m the only one,’” said Marco. “’I’m the only kid with cancer. I’m the only kid with cancer in my family. I’m the only kid with cancer in my school.’ By being treated at a children’s hospital and seeing other kids, he could realize, ‘I’m not the only kid with cancer.’”