cover

story

Miami
Nationally By Damaris Lasa

Chi
Recognized,

dren
Locally

's
Loved

"One more thing," said the voice on the answering m~chine, "my wife and I could never thank the doctors at Miami Children's Hospital enough. Every time we look at Devyn, we thank God for them." Ian Caven left the heartfelt message on my machine. He called me back to express his appreciation for Miami Children's Hospitalone more time. Earlier that day, I spoke with Ian about one of the biggest challenges his family has ever faced. It was a challenge he saysthey never could have braved alone. DEVYN'S STORY

passing through small blood vessels. This causes the flow of blood and oxygen to slow down or stop, leading to pain and damage to parts of the body. According to Dr. Athena Pefkarou, director of the Sickle Cell Anemia Program at Miami Children's Hospital, people with the diseasebasically fit into one of three categories. Their complications are mild, moderate or severe. A person with severe sickle cell disease will likely have a shortened life span and a life full of painful complications. The Caven family would have to wait to see what direction the disease would take in their newborn. Unfortunately, they would not wait very long. Devyn's problems started when she was just two months old. According to her father, the cycle started when a common cold turned into pneumonia. "The fact that the sickle cell was affecting her lungs was the first indication that it was going to be troublesome," said Mr. Caven. And troublesome it was. By the time Devyn was four, she had battled several ailments causedby the disease,including respiratory syncital virus disease (RSV) and acute chest syndrome (ACS) -a frequent cause of death in children with sickle cell. By the time she was seven, Devyn was having debilitating strokes. Desperate and fearing permanent neurological damage, the Cavens turned to Miami Children's Hospital. ONLY LICENSED SPECIALTY HOSPITAL IN SOUTH

The day Devyn was born, Ian and Cecile Caven knew their baby girl had sickle cell disease. Sickle cell is an inherited, chronic illness marked by anemia, episodes of pain and increased susceptibility to infections. Simply stated, the disease causesblood molecules in the body to change shape. These "sickled" cells, which are hard and rigid, have a hard time

From left to right,

Danielle Cave", and Devyn Cave", sisters.

FLORIDA

EXCLUSIVELY

FOR CHILDREN

At first glance, the bright facility almost looks like a theme park. The colorful buildings and murals make it clear that children are welcome. Warm and inviting as the grounds may appear, however, the state-ofthe-art facility is dedicated to very serious work. Miami Children's is a world leader in pediatric health care, opening its doors to more than 180,000 patients a year. Founded as Variety Children's Hospital in 1950 and later renamed, the facility is the only licensed specialty hospital in South Florida that is exclusively for children. More than 650 physicians and 2,000 employees offer world- renowned excellence in comprehensive services for children from birth to age 21. CANCER CENTER BONE MARROW PROGRAM IS

NATIONALLY

RECOGNIZED

The Cancer Center at Miami Children's is the region's largest and most comprehensive. It provides care for more pediatric patients than anyother facility in South Florida. The center offers diagnostic services and treatments for children with cancer, leukemia and other blood disorders like Devyn's. The Bone Marrow Transplant Program, under the direction of John A. Fort, M.D., is the only freestanding pediatric hospital in the state of Florida that is accredited by the Foundation for the Accreditation of Cellular Therapy (FACT). The Cavens had heard about bone marrow transplant and about the program at Miami Children's. They wondered if it might be the answer for Devyn.
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Above: From left to right, Devyn Caven, father Ian Caven and Danielle Caven. Right: Dr. John Fort and Devyn Caven.

Bone marrow transplant, also known as hematopoietic

stem cell

transplant, is the only cure for sickle cell disease. During the procedure, the red blood cells of the sickle cell child are replaced by healthy cells from a donor. The transplant seemed like the perfect solution for Devyn, but there were still huge risks. "Devyn had experienced more than one stroke; every time she would have one, things would get worse," said Dr. Pefkarou. "Even though a successful bone marrow transplant may prevent additional strokes, the family and physicians had to weigh the risk of transplantation." FACING THE RISKS TOGETHER

Before the procedure could take place, doctors had to begin by counseling the family. "Our role was to remain objective, answer all of the family's questions, and enter into the risk with them," said Dr. Fort. Dr. Escalon, the director of the Division of hematology / oncology and the Cancer Center understood those risks well. Escalon made the decision to specialize in Hematology / Oncology after losing a nephew to cancer in the early 60s. He was an important part ot the team that worked with the Caven family. "These are catastrophic diseases," said Escalon. "We make it a point to establish a very strong relationship with the families from day one. We are the ones who tell the family about the diagnosis and complicated treatments. We also offer them options, answer questions

 o "' 1<n UJ "' "' O UJ >III O 10 ;1: Q.

Dr. John Fort and Linda Oher, MSN, ARNP.

and give them hope. We are here to explain everything to them." After several meetings with the Cavens, physicians at Miami Children's Hospital thought that Devyn's condition was serious enough to warrant the bone marrow transplant. The family agreed. "The alternative was Devyn having more strokes, facing loss of speech, brain function and learning disabilities," said Mr. Caven. "The fact that her sister was a perfect match was a sign to us that we should go forward." THE GIFT OF LAUGHTER

john A. Fort, M.D., Director, BoneMarrow TransplantProgram Dr. Fort received his medical degree at University of Louisville Medical School in Louisville, KY. He completed his residency at the University of Louisville and a fellowship in pediatric hematology / oncology at the University of Florida in Gainesville. Dr. Fort is board-certified in pediatrics and pediatric hematology / oncology, and served asassistantprofessor to the Bone Marrow Transplant Program at George Washington University. Enrique A. Escalon,M.D., Director, Division of Hematolo8J'/Oncolo8J' and CancerCenter Dr. Escalon earned his medical degree from University of El Salvador Medical School. He served his residency at Miami Children's Hospital, and was appointed chief resident in 1974. Dr. Escalon completed his fellowship in pediatric hematology-oncology at Miami Children's Hospital and is board-certified in pediatrics and pediatric hematology/oncology. Dr. Escalon has also served since 1990 asprincipal M CH investigator for the Children's Oncology Group, a prestigious cancer research organization in which MCH holds membership status. AthenaC. P~arou, M.D., Association Director,DivisionofHematolo8J'Oncol/ o8J"Director of Hematolo8J' Oncolo8J' / Clinics and SickleCell AnemiaProgram Dr. Pefkarou received her medical degree from the University College Medical School at London University in London, England. Shecompleted her residency in pediatrics at Mercy Hospital in Baltimore and a fellowship in pediatric hematology/oncology at Miami Children's Hospital. Dr. Pefkarou is board-certified in pediatrics and pediatric hematology/oncology. .

The results were obvious immediately. "Devynhad more energyrecovering from the transplant than when she had sickle cell," saysMr. Caven. "After years of crying, her transplant came with the gift of laughter and joy." Today, nearly one year later, Devyn is even further along on the road to recovery. The doctors sayher blood counts are high and her long-term prognosis is excellent. They expect her immune system to recover. The Cavens say Devyn, who just celebrated her tenth birthday, is an angel who has taught their family a lot. They look forward to seeing how her life will unfold. "We're very interested to see what direction Devyn will take as she grows into a young woman and an adult because of her strength and her ability to bounce back." Mr. Caven also says that one of the greatest gifts his family has received is the gift of joy. "Devyn's transplant came with the gift of laughter. After spending many years crying and in pain, she is now a very happy, giggly little girl."

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PHYSICIANS JUNE/JULY 2004