Ewing Sarcoma: Antonio's Story

In November 2012, 15-year-old Antonio Santos started complaining of pain in his leg. 

His parents, Joy and Cecilio Santos, weren’t immediately concerned. It wasn’t the first time the high school soccer goalie had aches and pains.

But when his leg appeared swollen a few weeks later, Joy took Antonio to see his New Jersey pediatrician, Michael Foreman, MD.

antonioDr. Foreman didn’t like what he felt in Antonio’s leg, and sent the family to The Children’s Hospital of Philadelphia (CHOP) for testing. Initial blood work came back normal, but the teenager’s doctor was still concerned.

He scheduled an MRI, a test that lets doctors look at the structures of the body, for Dec. 21.

“Dr. Foreman called us crying,” says Joy. “He said, ‘There’s a massive tumor in Antonio’s leg and you need to go to CHOP right away. There’s a team there who knows you’re coming.’”

At CHOP, oncologist Edward Attiyeh, MD, confirmed Antonio had a cancerous tumor, but they needed to determine the exact diagnosis. Antonio was referred to John P. Dormans, MD, FACS, chief of Orthopedics and a biopsy confirmed the tumor was a rare bone cancer.

“Dr. Dormans told us it was a cancer called Ewing sarcoma, and that it had spread down to his right ankle, up to his right hip and into his lungs,” says Joy. At that point, oncologist Richard Womer, MD, and Dava Szalda, MD, joined Antonio’s growing team at CHOP.

Only 250 people are diagnosed with Ewing sarcoma each year, and most of them are teenagers. The cancer is caused by chromosomal changes that happen after a child is born. While it is a genetic disease, it is not passed down from parents to their children.

“The first thing you ask when you learn your child has cancer is, ‘Is he going to live?’ They told us the truth — ‘We’re going to do everything we can to save his life,’” says Joy. That week, Antonio began the first of 15 rounds of aggressive chemotherapy. He came to CHOP every two weeks for chemo, each time remaining an inpatient for two to five days. Soon radiation was added to his rigorous treatment regimen.

The goal was to shrink the tumor as much as possible before considering whether Antonio would need surgery. Ewing sarcoma patients often require limb-sparing surgery in which the diseased bone and joints are removed and replaced with metal endoprosthesis, as an alternative to amputation.

The Santos family had to adapt to a new way of life. Joy and Cecilio spent days on end at CHOP, while trying to keep life as normal as possible for their 8-year-old daughter, Rose. Antonio’s sister struggled to understand what was happening to her big brother, scared to see him so sick, and upset that her parents had to be away from her so often.

And all the while, Antonio was fighting. He was nauseous from chemo, missing his friends and his soccer team, and working through the fear and uncertainty that had become a part of everyday. But his smile rarely dimmed and his personality shined through it all. Antonio quickly became a favorite of the oncology staff members, who were always stopping by talk. He became close with another teenage cancer patient, and the friendship became an important support system for both families.

Antonio turned 16 in February 2013, about two months into his treatment. That same month a new round of scans heartened the family and medical team. The cancer in his lungs had disappeared, and the large tumor in his leg was significantly smaller.

“His doctors were floored,” says Joy. “They had tears in their eyes when they saw how much his tumors had shrunk.”

Dr. Dormans told the family that there was a chance Antonio wouldn’t need surgery if things kept going well. He continued his chemotherapy and radiation treatments, finishing both in August 2013. Additional testing in late August will tell doctors the status of his cancer, and help them determine what’s next for Antonio.

After eight months spent coping with his disease, Antonio recognizes how much the experience impacted his life.

“Having cancer is life-changing,” says Antonio. “You could have the perfect life and be happy every day and all of a sudden something happens to you, you feel grateful for everything else. You feel grateful for everything you have and everything you missed. I feel more connected to my friends and family.”

Those friends and family will be by Antonio’s side on Sunday, Sept. 29, as his teammates in the 2013 Four Seasons Parkway Run & Walk. He was chosen as a Parkway Run ambassador, one of several patients who will lead thousands of runners and walkers down the Ben Franklin Parkway.

The 5K run and 2K walk is the largest annual fundraiser for the Cancer Center at CHOP; money raised by the event benefits childhood cancer research and survivorship programs at CHOP.

“Every patient here is strong and I know every patient here is special,” says Antonio. “I feel like there's hope for everyone here. They tell me I’m going to play soccer again, and I believe them.”

Donate to Team Antonio to help him raise money for pediatric cancer research at CHOP.