An Advocate For Patients And Families
Michelle Barone, Director of Patient- and Family-Centered Care for Memorial Healthcare System, travelled a long road to get to where she is now.
Once a stay-at-home mom fighting to save her daughter from cancer, today she is the first to lead Memorial’s newly launched system-wide approach to its established patient- and family-centered care philosophy.
It started in August 1998, when Michelle noticed her nearly three-year-old daughter, Christa, was not acting like her cheerful self.
“Something was not right,” recalls Michelle. “She was lethargic, didn’t want to play. She wasn’t my happy-go-lucky Christa.”
After endless doctors visits, extensive testing and a succession of random and seemingly inexplicable symptoms, the family finally got their diagnosis: stage four neuroblastoma.
The American Cancer Society describes neuroblastoma as “a type of cancer that starts in certain very early forms of nerve cells found in an embryo of fetus.” It occurs most often in infants and young children, and it’s tougher to treat than the leukemia doctors initially thought Christa had.
Michelle put aside PTA meetings and little league games to be with her daughter. The new normal included five rounds of chemotherapy, surgery, two stem cell rescues, radiation treatment and lengthy quarantines. Michelle immersed herself in the health of her youngest child, taking notes on every aspect of the treatments and making suggestions based on Christa’s reactions.
“Everyone here at Joe DiMaggio Children’s Hospital listened and included me in her care. I needed a little bit of control and needed to follow along on her journey,” Michelle says.
Slowly, Christa recovered and life for the Barones carried on. But Michelle couldn’t shake the impression Joe DiMaggio left on her. She was drawn to this “magical” place, regularly attending hospital events and eventually joining the Patient and Family Advisory Council. After attending a conference in California, she initiated a patient and family mentor program at Joe DiMaggio.
Supervisors were so impressed with Michelle’s work, they created a paid position for her: Patient and Family Advocate for Joe DiMaggio Children’s Hospital.
“Our physicians saw the benefit and kept me very, very busy. It was probably one of the first times that we took a mom with such an experience as mine and put her in an employee role,” says Michelle.
Like her mother, Christa began volunteering her time at Joe DiMaggio at age 13. Drawing from her own experiences as a patient to help other sick kids, she joined the Youth Advocacy Council in 2009. The communications major was council president for three years before stepping down some months ago to finish her studies at Nova Southeastern University.
“I joined to give my input about the different topics that the hospital would ask us about; it wasn’t until years later that I became the president,” says Christa. “I thought it was important for past patients, like myself, to have a voice and make sure the hospital environment was a place for young patients to heal and get better.”
With her family thriving, Michelle assumed the position of Director of Patient- and Family-Centered Care for Joe DiMaggio in 2011 and later became the director for the entire healthcare system in 2016, now her current role, where she oversees patient- and family-centered care for all of Memorial’s facilities. Her new responsibilities encapsulate everything she’s accomplished these last 20 years – successes born from a unique combination of personal and professional experiences. From day one, her passion for patient and family advocacy has never waivered.
“My new employee orientation felt like a pep rally,” Michelle recalls of her first days on the job. “I remember J.E. Piriz, former CEO of Memorial Regional Hospital, at our lunch talking about how being a Memorial employee was not just being an employee; it was really about following your calling. I remember tearing up because I could never put into words to how I felt, and he got it. That’s exactly how I feel.”