Research Study, New Medicine Lead to Improved Way of Life
Born with sickle cell disease, sisters Traonna, 12, and Carlisha, 9, were in and out of the hospital when they were younger. They took penicillin, managed their pain with blood transfusions, but still had frequent ER visits. Then they became patients at our Sickle Cell Center and began taking hydroxyurea as a new form of treatment.
Carla Fondia and her husband, Raven, left their home in Illinois several years ago in search of better job opportunities.
They found a home in Northern Kentucky, Raven found work and Carla found out they had moved within 20 minutes of the world-class Cancer and Blood Diseases Institute at Cincinnati Children’s.
Their daughters, both born with sickle cell disease, needed a hematologist. It wasn’t long before Traonna and Carlisha were patients at our Sickle Cell Center.
The sisters participated in a research study and began taking hydroxyurea as their new medicine. After a few months the improvement was obvious to their parents and the care team.
Doctors, nurses and staff saw the positive increases through blood work and the girls’ improved hemoglobin levels. Mom and Dad noticed their daughters were eating more, feeling better and no longer living in near-persistent pain.
The reason: hydroxyurea.
“It was a dramatic change. I was crying,” Carla said. The girls had been in and out of the hospital. “It was stressful for them and for me,” she said.
The breakthrough came during a research study with Patrick McGann, MD, who – along with Russell Ware, MD, PhD – is focused on improving outcomes for children like Carlisha and Traonna.
Living With Less Stress, Less Pain
Living with sickle cell disease will always mean some level of stress and uncertainty, but the inclusion of hydroxyurea in the treatment plan has helped the family create a more stable and consistent course of care.
Gone are the days of multiple emergency room visits in a given month. As a result, the Fondia sisters have less anxiety about blood draws and needles.
It also helps Carlisha to have a big sister for support.
“When we go into the hospital and they have to have blood drawn, Carlisha is kind of reluctant. But Traonna will say, ‘I'll go first’ – to encourage her and put her at ease,” said Carla.
And while Carlisha is getting her blood drawn, Traonna offers her a hand to hold.
“They are very supportive of one another,” Carla said.
Living with the disease is difficult, Traonna said, but she will always be there for her younger sister.
“It’s hard but at the same time I have to look out for her. I want to be a role model, and I want her to look up to me,” said Traonna.
The girls have gained peace of mind in knowing to expect blood draws during clinic visits every three months. Carla notes a similar peace of mind in knowing her children are in good hands.
“I love the care the doctors and everyone has for my children. They are genuine and truly care,” she said. “I really do appreciate the help that they’ve given us. It caused us to have a beautiful, dramatic change in their health.”
Part of the Care Team
Not only does Carla see the way the care team treats her daughters, she appreciates how the medical team includes her as a member of the care team.
She encourages all parents of sickle cell patients to take an active role in their children’s care and to ask plenty of questions. She also recommends asking doctors about whether hydroxyurea is right for their child.
Carla said she has found all that she’s looking for in a hospital at Cincinnati Children’s.
“What I look for, as far as my kids going to the doctor, is if I can tell when someone really cares. There are many doctors and nurses, but you can tell when they genuinely care for the patient,” said Carla. “And that’s what I like about the sickle cell team – they care.”