Translating Science - Page 2 of 2

Cowan first used bone marrow transplant to save the life of a child with SCID in 1982. Since then, the UCSF program has cared for more than 100 infants with various types of inherited immunodeficiency diseases. In all, it has treated more than 450 children with these and other serious disorders, including aplastic anemia and cancer.

In the seven special isolation rooms of the UCSF Pediatric Bone Marrow Transplant Center, Cowan and his team have created a haven for children of every age, where the staff can support the whole child, not only his or her medical needs, and where the family is at the center of care. With charitable help like the home-away-from-home offered by Family House, they help families cope with a stay in and near the hospital that can last for many months.

That support is likely to continue for years after the patient leaves the hospital. Inborn disorders like SCID are so rare that Cowan and his colleagues are often the main specialists to monitor their patients' health as they grow up. Clinical nurse specialist Linda Abramovitz has cared for BMT children throughout her career, so when a parent phones in concerned about an unusual symptom, she is both the expert advisor and the family friend.

Says Cowan, "I've vowed never to turn down an invitation to a graduation or a wedding."

Yet Cowan and his fellow pediatric BMT physician, Biljana Horn, must also prepare parents for a drastic treatment that usually will make the child feel worse before he or she begins to feel better. They must explain that even with the best care not every child will be saved.

The Navajo families have taught them new ways to make those explanations. The UCSF team learned early, for example, that it is impolite among the Navajo to speak about bad possibilities for an individual -- to say, "Your child might feel terrible" is the equivalent of wishing pain on the patient. "Some children feel ..." is a gentler statement.

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Page 4 - Treasured Laughter

Page 5 - UCSF in Tuba City

Page 6 SCID Kids' Caregivers

Page 7 - Assertiveness Training