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When the Flaherty family arrived at Cincinnati Children’s on New Year’s Eve 2007, they knew their son William was ill, but they had no idea just how sick he really was.
“When the doctors asked if William had been diagnosed with leukemia, we knew something was very wrong,” recalls Dennis Flaherty, William’s father.
William, then 3, was admitted to Cincinnati Children’s immediately. He was dangerously close to liver failure and his condition was deteriorating rapidly. Within the first week of hospitalization, William had nearly a dozen blood transfusions.
Tests revealed that the liver failure in William was caused by hemophagocytic lymphohistiocytosis (HLH), an extremely rare immune deficiency disorder in which the immune system doesn’t switch off as it should. The disease can be genetic or acquired, but both are deadly without early and aggressive treatment.
“His own immune system had gone through his body attacking organs, starting with the liver, then the bone marrow and would probably have gone on to his brain or lungs,” says William’s mother, Ann Flaherty.
Cincinnati Children’s is home to the Immune Deficiency and Histiocytosis Program, an internationally recognized program that brings the best, most innovative care to children with HLH and more than 80 other rare immune deficiency and histiocytic disorders.
HLH primarily affects very young children, but it is found in patients of all ages. In those with HLH, the immune system keeps sending out infection-fighting cells even when a threat has been defeated. As the immune system stays on heightened alert, good cells are destroyed and organs begin to shut down.
After William was diagnosed, the Flahertys met with his care team — approximately 15 people including the specialists at Cincinnati Children’s and William’s pediatrician.
“I’m a numbers guy, and I asked them to tell us straight. On a scale from one to 10 — one he’s healthy and 10 he’ll die — what are William’s chances? They said 9.5,” Dennis remembers. “The room went silent. Then we just started crying. It felt like someone just ripped the core right out of us and there was nothing we could do about it.”
The progression of HLH varies among individuals, but it is typically quite aggressive. As a newly recognized disorder, it is often not diagnosed until it is too late to save the child. Cincinnati Children’s is one of the only hospitals worldwide that offers a unique combination of expert medical care, state-of-the-art testing and extensive research in this very specialized area of medicine.
William needed a bone marrow transplant. Without it, his chance for survival was slim.
The daunting task of finding a marrow donor for William began. Adult donors are typically used unless there is a sibling match, which happens in only one of four cases.
William’s brother Charles, then 7, was a perfect match.
The family’s joy at discovering that Charles was a match was tempered by the fact that he would undergo surgery, which always carries the risk of complications. Doctors would remove, or harvest, stem cells, which are used because they continuously grow, divide and replace themselves, from Charles’ marrow. They would then process the bone marrow and place the cells in a bag, like IV medication, and infuse them into William’s body through a central line in his chest.
When William was diagnosed with a deadly disorder at age 3, his big brother Charles, then 7, gave his bone marrow to save him. Pictured above (l-r), Charles comforts William in his hospital bed the day before the transplant.
“It’s kind of like gardening,” explains Stella Davies, MBBS, PhD, MRCP, director of the Division of Bone Marrow Transplantation and Immune Deficiency at Cincinnati Children’s. “We take the seed from one person and plant it in another. Then it must be nourished and allowed to grow and flourish.”
On April 10, 2008, the boys had the transplant procedures. The bone marrow harvest went smoothly for Charles, but William was quite anxious and became very upset as his caregivers tried to attach the line to his chest to start the transplant.
Charles sat on the bed with his brother and helped take away his fear.
“William immediately stopped fighting. He just needed his brother,” Ann says.
Both boys recovered quickly. Charles was home in just one day and back to school in three days. He still has some slight soreness in his hip, but doctors expect it to fade away completely when he finishes growing.
William’s white blood cell count was up — a sign that the bone marrow stem cells were repopulating his blood — just eight days after the transplant. This typically doesn’t happen for about 21 days. And two weeks after the procedure, William went home. He returned to school after eight months of recovery.
“The brilliant doctors in immunology and the bone marrow transplant program did an incredible job saving William,” Ann says.
William, now 5, is considered cured, but continues to visit Cincinnati Children’s every four months for follow-up care.
While bone marrow transplantation has proven to be very successful for the treatment of HLH and other diseases, it is a relatively new medical treatment. The first bone marrow transplant was done in 1968 — just 40 years ago. And HLH is a newly discovered immune deficiency disorder.
“There is very little known about HLH and right now only about 25 percent of children are diagnosed early enough to be saved. Research is needed to truly understand this disease and save the lives of children,” Ann says.
The Flahertys made a commitment to helping Cincinnati Children’s combat this disorder by giving a major gift to support research at the medical center.
“The doctors and scientists at Cincinnati Children’s are the best at caring for and researching HLH,” Ann says. “They saved William and they will save other children. That’s why we support their work.”
If you have had an experience with the Cancer & Blood Diseases Institute, we invite you to share your story.
When William was diagnosed with HLH, Charles volunteered to donate his bone marrow to save him.
The newly established Cincinnati Children’s Cancer and Blood Diseases Institute is home to internationally renowned experts in research and clinical care for children with immunodeficiency disorders, cancer and blood diseases. And the institute’s Bone Marrow Transplantation Program is one of the leading transplant programs in the nation. Families travel from across the globe to Cincinnati Children’s for specialized care and transplant therapies to treat cancer and rare conditions.
“I have worked in or visited many, many children’s hospitals around the world, and I have never found one that is even close to providing the quality of care found at Cincinnati Children’s,” says Stella Davies, MBBS, PhD, MRCP, who leads the bone marrow transplant program at Cincinnati Children’s and is an international authority on blood and marrow transplantations.
The Cancer and Blood Diseases Institute at Cincinnati Children’s closely integrates patient care and research in order to advance knowledge and achieve better outcomes for our patients and their families.
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