The Downey family was enjoying the holidays with family in Guatemala in 2017 when their 13-month-old daughter Stella started having unusual symptoms.
“She was very clingy towards me and not acting like herself,” says Stella’s mom, Fiorella, a child life specialist at Boston Children’s Hospital. “It was so extreme that I brought her to the doctor in Guatemala thinking she had an ear infection.” A few days later, Stella was struggling to move her legs. By the time the family returned to Boston on January 3, 2018, Stella couldn’t crawl to reach her toys.
Fiorella brought Stella to her pediatrician, who sent her to the Emergency Department at Boston Children’s Hospital, but those trips didn’t yield immediate answers. “At first, they thought she was having some sort of stomach issue,” says Fiorella. “But as her mom, I knew something else was wrong. It was like every part of my body hurt, knowing this.”
That was when she got a call from the attending physician who had seen Stella in the emergency room. “When I told the doctor that Stella wasn’t any better, she said to come in right away for an MRI,” says Fiorella. “I think of that doctor as one of our angels.”
Neuroblastoma diagnosis leads to aggressive treatment
The MRI proved Fiorella’s worst suspicions. Stella had a tumor in her back. With further testing, they learned it was neuroblastoma, a type of cancer most commonly found in young children. The family met with oncologist Dr. Steven DuBois, director of Experimental Therapeutics at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
“Fortunately, the cancer had not yet spread, and Dr. DuBois thought very aggressive chemotherapy would work,” says Fiorella. About 24 hours later, Stella had her first treatment. “Within 12 hours after the chemo, she was moving her legs again. Dr. DuBois is another one of our angels.”
Stella stayed in the hospital for two weeks after her first treatment, and then returned on an outpatient basis for two more. “They originally thought she might need eight treatments, but her body responded so well she needed only three,” says Fiorella.
Keeping an eye on cancer and her heart
Stella will continue to have scans every six months to make sure the cancer does not return. She’s also a regular visitor to the office of cardiologist Dr. Laura Mansfield, who keeps an eye on the two heart conditions Stella was born with, pulmonary stenosis and an atrial septal defect (ASD).
“We know she’ll eventually need surgery for her heart, but that won’t be until she’s about 4,” says Fiorella. Until that time, Stella is busy being a typical 2-and-a-half-year-old. She enjoys playing with her twin brother Thomas, listening to music, and loves animals, especially cats. She’s also got a great sense of humor that keeps her family laughing.
A life-changing experience
For Fiorella, the experience with Stella’s cancer has been life-changing, both personally and professionally. When Stella was first diagnosed, Fiorella wasn’t sure she’d be able to return to her job because it would be too painful. “But I’m here and that says a lot,” she says. “The amount of kindness we experienced from the entire staff made an unbearable situation bearable. I think I’m a better child life specialist because of it.”
Not only has Fiorella returned to her job, but she also decided to join the Family Advisory Council (FAC). “I wanted to have a voice in patient care, and the fact that I work here helps me see both sides. I feel like I learned so much from our experience and I want to act as an advocate for other families.”