Stories about: Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

Pulmonary vein stenosis: A clinical trial in Jack’s juice glass

Jack, who has pulmonary vein stenosis, is pictured sitting on the back deck at this family homeAt just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.

But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.

“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew.

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Two life-threatening conditions.
One remarkable wish.

Lucas, who received a 5-organ (multivisceral) transplant looks over his mom's shoulderWhen Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.

“It was a gift I couldn’t give,” says his mom, Heather.

On that same day, last May, he got his wish.

“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.

Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born.

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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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