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cover story

Miami Chi dren ' sNationally Recognized, Locally LovedByDamarisasa

"One more thing," said the voice on the answering m~chine, "my wifeand 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 meback to express his appreciation for Miami Children's Hospital- onemore time. Earlier that day, I spoke with Ian about one of the biggestchallenges his family has ever faced. It was a challenge he says hey nevercould have braved alone.

DEVYN'S STORYThe day Devyn was born, Ian and Cecile Caven knew their baby girl

had sickle cell disease. Sickle cell is an inherited, chronic illness markedby anemia, episodes of pain and increased susceptibility to infections.Simply stated, the disease causesblood molecules in the body to changeshape. These "sickled" cells, which are hard and rigid, have a hard time

passing through small blood vessels. This causes he flow of bloodoxygen to slow down or stop, leading to pain and damage to partthe body.

According to Dr. Athena Pefkarou, director of the Sickle Cell AneProgram at Miami Children's Hospital, people with the diseasebasifit into one of three categories. Their complications are mild, moate or severe. A person with severe sickle cell disease will likely hashortened life span and a life full of painful complications. The Cfamily would have to wait to see what direction the disease would in their newborn. Unfortunately, they would not wait very long.

Devyn's problems started when she was ust two months old. Accing to her father, the cycle started when a common cold turned pneumonia. "The fact that the sickle cell was affecting her lungs wafirst indication that it was going to be troublesome," said Mr. Caven.troublesome it was. By the time Devyn was four, she had battled seailments causedby the disease, ncluding respiratory syncital virus dis(RSV) and acute chest syndrome (ACS) -a frequent cause of deachildren with sickle cell. By the time she was seven, Devyn was hadebilitating strokes. Desperate and fearing permanent neurological dage, the Cavens turned to Miami Children's Hospital.

From left to right, Danielle Cave", and Devyn Cave", sisters.

ONLY LICENSED SPECIALTY HOSPITAL IN SOUTFLORIDA EXCLUSIVELY FOR CHILDRENAt first glance, the bright facility almost looks like a theme park. colorful buildings and murals make it clear that children are welcoWarm and inviting as the grounds may appear, however, the statethe-art facility is dedicated to very serious work. Miami Childrena world leader in pediatric health care, opening its doors to more 180,000 patients a year. Founded as Variety Children's Hospital in and later renamed, the facility is the only licensed specialty hospitSouth Florida that is exclusively for children. More than 650 physiand 2,000 employees offer world- renowned excellence in comprehenservices for children from birth to age 21.

CANCER CENTER BONE MARROW PROGRAM ISNATIONALLY RECOGNIZEDThe Cancer Center at Miami Children's is the region's largest and

comprehensive. It provides care for more pediatric patients than anyofacility in South Florida. The center offers diagnostic services and tments for children with cancer, leukemia and other blood disordersDevyn's. The Bone Marrow Transplant Program, under the direcof John A. Fort, M.D., is the only freestanding pediatric hospital instate of Florida that is accredited by the Foundation for the Accreditaof Cellular Therapy (FACT). The Cavens had heard about bone matransplant and about the program at Miami Children's. They wondif it might be the answer for Devyn.

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Above: From left to right, Devyn Caven, fatherIan Caven and Danielle Caven.

Right: Dr. John Fort and Devyn Caven.

Bone marrow transplant, also known as hematopoietic stem celltransplant, is the only cure for sickle cell disease. During the procedure,the red blood cells of the sickle cell child are replaced by healthy cellsfrom a donor. The transplant seemed ike the perfect solution for Devyn,but there were still huge risks. "Devyn had experienced more than onestroke; every time she would have one, things would get worse," saidDr. Pefkarou. "Even though a successful bone marrow transplant mayprevent additional strokes, the family and physicians had to weigh therisk of transplantation."

FACING THE RISKS TOGETHERBefore the procedure could take place, doctors had to begin by coun-seling the family. "Our role was to remain objective, answer all of thefamily's questions, and enter into the risk with them," said Dr. Fort.

Dr. Escalon, the director of the Division of hematology / oncology andthe Cancer Center understood those risks well. Escalon made the decisionto specialize in Hematology / Oncology after losing a nephew to cancerin the early 60s. He was an important part ot the team that worked withthe Caven family. "These are catastrophic diseases," said Escalon. "Wemake it a point to establish a very strong relationship with the familiesfrom day one. We are the ones who tell the family about the diagnosis andcomplicated treatments. We also offer them options, answer questions

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

THE GIFT OF LAUGHTERThe results were obvious immediately. "Devynhad more energyrecov-

ering from the transplant than when she had sickle cell," saysMr. Caven."After years of crying, her transplant came with the gift of laughter andjoy." Today nearly one year later, Devyn is even further along on the roadto recovery. The doctors sayher blood counts are high and her long-termprognosis is excellent. They expect her immune system to recover.

The Cavens say Devyn, who just celebrated her tenth birthday, is anangel who has taught their family a lot. They look forward to seeinghow her life will unfold. "We're very interested to see what direc-tion Devyn will take as she grows into a young woman and an adultbecause of her strength and her ability to bounce back." Mr. Cavenalso says that one of the greatest gifts his family has received is thegift of joy. "Devyn's transplant came with the gift of laughter. Afterspending many years crying and in pain, she is now a very happy,giggly little girl."

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 warrantthe bone marrow transplant. The family agreed. "The alternative wasDevyn having more strokes, facing loss of speech, brain function andlearning disabilities," said Mr. Caven. "The fact that her sister was aperfect match was a sign to us that we should go forward."

LIFESAVING TEAM OF PHYSICIANS

john A. Fort, M.D., Director, BoneMarrow TransplantProgramDr. Fort received his medical degree at University of Louisville Medic

School in Louisville, KY. He completed his residency at the University Louisville and a fellowship in pediatric hematology / oncology at the Uversity of Florida in Gainesville. Dr. Fort is board-certified in pediatrand pediatric hematology / oncology, and served asassistantprofessor to tBone Marrow Transplant Program at George Washington University.

Enrique A. Escalon,M.D., Director, Division of Hematolo8J'/Oncolo8JCancerCenter

Dr. Escalon earned his medical degree from University of El SalvaMedical School. He served his residency at Miami Children's Hospitand was appointed chief resident in 1974. Dr. Escalon completed his lowship in pediatric hematology-oncology at Miami Children's Hospiand is board-certified in pediatrics and pediatric hematology/oncologyDr. Escalon has also served since 1990 asprincipal M CH investigator the Children's Oncology Group, a prestigious cancer research organiztion in which MCH holds membership status.

AthenaC. P~arou, M.D., Association irector,Division ofHematolo8J' Ono8J"Director of Hematolo8J' Oncolo8J'Clinics and Sickle Cell Anemia Progr

Dr. Pefkarou received her medical degree from the University ColleMedical School at London University in London, England. She complether residency n pediatrics at Mercy Hospital in Baltimore and a ellowshippediatric hematology/oncology at Miami Children's Hospital. Dr. Pefkais board-certified in pediatrics and pediatric hematology/oncology. .