Author: Irene Sege

A parent’s guide to clinical trials

Photo of science lab

Children with life-threatening conditions, such as cancer, are often candidates for clinical trials. What are they? Which factors should parents weigh in determining whether enrolling in one is a good option for their child? Dr. Steven DuBois, director of the Advancing Childhood Cancer Therapies Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, answers questions about clinical trials.

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Gene therapy trial offers hope for Harry

Boy with Wiskott-Aldrich syndrome holds father's hand.
Harry and his father at Dana/Farber-Boston Children’s

In their Brookline home-away-from-home, 2-year-old Duy Anh “Harry” Le plays with blocks and pop-up toys on the floor with his mother, Thao Nguyen. He is lively and happy, and his skin is clear. He looks almost nothing like the sickly baby covered in eczema who arrived in Boston from his native Vietnam in November of 2016 to participate in a gene therapy clinical trial for Wiskott-Aldrich syndrome.

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Blood relatives: Family bound by love and rare blood disorder

Tracy Antonelli was 4 when she was diagnosed with thalassemia, a rare blood disorder that occurs often enough in Mediterranean countries like Italy that an old adage, uttered only partially in jest, warns Italian-Americans against marrying other Italian-Americans.

In 2002, Tracy wed Patrick Mooty, whose background is mostly Irish. Their three daughters — 7-year-old Emmilene, 6-year-old Rosalie and 3-year-old Francesca — all have thalassemia, but not through the accident of the couple’s genetics. Tracy and Patrick adopted the girls from China, specifically because they, too, have the potentially life-threatening disease, which, according to conservative estimates, occurs in about 10,000 pregnancies a year in China and about 600 a year in the United States.

“This is the most rewarding, perfect experience I’ve had in my life,” says Tracy.

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Twist of fate: Anna reconnects with the oncologist who saved her life

Anna survived childhood cancer.
Credit: Mark Dela Cruz

Anna Protsiou was five in 2002 when she was diagnosed with neuroblastoma. She remembers pain and the fruit-scented anesthesia masks that led her to stop eating cherries. She remembers hospital arts and crafts projects. What she barely remembers is the pediatric oncologist who saved her life.

She was a young girl then who didn’t speak English, moving with her family from their native Greece to be treated for a year at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Now, after moving with her family to Canada in 2014, she’s a 20-year-old dance student at the School of Contemporary Dancers/ University of Winnipeg and a contortionist with a rubber-band body. She’s ready to claim her history as her own, ready to move beyond photographs of the doctor and memories recounted by her parents, ready to take charge of her own health care.

So Anna traveled to Boston to meet her physician, Dr. Lisa Diller, and learn about potential late effects of the high-dose chemotherapy, radiation and two stem cell transplants that eradicated her cancer after surgeons excised her tumor.

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