Lillian and Elijah Barrios, Retinoblastoma and Osteosarcoma
"Every time we come here, it's like we're coming to our second home."
Mother and Son Survivors Beat Cancer Together
When Elijah Barrios’ shoulder started to feel sore, his mother, Lillian, thought that he was just roughhousing too much with visiting cousins. But on Friday of that week, when the pain continued and his tendons swelled, she decided to make an appointment with his pediatrician for the following Monday.
By Monday, a golf ball-sized lump was protruding from Elijah’s shoulder.
When the pediatrician confirmed a cancer diagnosis, Lillian called hospitals around Florida. Many took down information and told her they would call back.
“But when we called Sylvester, they said ‘can you be here in the morning?’” Lillian recalls. “We’ll always be grateful for that.” They took a bus from Tallahassee that night, and were at Sylvester Comprehensive Cancer Center the following morning.
Elijah was diagnosed with osteosarcoma, a rare form of bone cancer.
Sadly, this was not the first run in with cancer for Lillian and her son.
When Lillian was six months old, she was diagnosed with retinoblastoma, a form of eye cancer. Her parents brought her to Sylvester for chemotherapy, radiation treatment, and surgery to remove her eye. She was diagnosed again at three years old, and went through the process a second time.
Doctors had told Lillian there was roughly a 50 percent chance her child would develop the same cancer, so she had them check Elijah as soon as he was born. Sure enough, shortly after birth he was diagnosed with retinoblastoma. He began chemotherapy at five days old.
“I was ready to do whatever we had to do,” Lillian says about Elijah’s diagnosis as a baby. “I want him here with me.”
Almost a decade later, when Elijah was diagnosed with osteosarcoma, she took comfort knowing he was in good hands.
“Every time we come here, it’s like we’re coming to our second home.”
Lillian chuckles when admitting she might have been a bit of a challenge to doctors and nurses administering treatment. She asked endless questions about every type of medicine Elijah received.“I am a public health student, so I was a bit of a pain,” she says. But Elijah’s physician, Sheila A. Conway, M.D., assistant professor of clinical orthopaedics, and his nurses were always happy to explain everything she wanted to know. “The main thing is that they always took us seriously … we never once felt like we were just a number.”
“Lillian has a unique perspective as an adult who was once a pediatric cancer patient,” says Dr. Goldberg, director of the Pediatric Oncology Early Phase Clinical Trials Program and a member of Elijah’s care team. “She brings out the best in her providers – her insightful questions and gentle concern for her son helped teach every one of us how to be better doctors and nurses.”
Now 12 years old, Elijah has been cancer free for about two years. He received clearance to return home to Tallahassee and come back for checkups every six months.“Both Elijah and Lillian possess a contagious optimism that has helped them persevere through multiple difficult diagnoses and treatments,” says Dr. Conway.
Lillian is also excited about the opening of Alex’s Place at Sylvester, where children like Elijah can receive treatment in an innovative, kid-friendly environment. She is especially fond of the new garden in the Sylvester courtyard, which brings back memories of Elijah picking flowers for his mother as a young child.
“It’s so wonderful that they’ve built Alex’s Place … kids will be able to think about things other than just the scary side of treatment,” she says. “They deserve it, because of everything they go through.”