St. Jude patient Phoebe

First steps: Phoebe's story

Phoebe hadn't been able to do many things before coming to St. Jude. Now, St. Jude doctors are giving her the chance to experience those special moments.

 

When 14-month-old Phoebe arrived at St. Jude Children’s Research Hospital in October 2011, there were many things she had never done: She had never been to day care or the park or the zoo. Phoebe had never run through the grass with her older sister, Mae, and she had never been to the grocery store. Phoebe had also never enjoyed food; instead, her nutritional needs were met through a nasogastric (NG) tube that sent food directly to her stomach.

Phoebe had spent most of her life in hospitals.

At just 9 weeks old, Phoebe was found to suffer from acute lymphoblastic leukemia (ALL). Although ALL has a survival rate of 94 percent, Phoebe’s parents, Jenny and Jon, clung desperately to hope, because infant ALL is often a more deadly form of leukemia. She underwent treatment, including a bone marrow transplant, in Canada, her family’s home.

When Phoebe relapsed just 76 days post-transplant, her family was devastated. Phoebe’s doctors told Jenny and Jon to take her home, that there was likely nothing more to be done.

“That wasn’t an option for us,” said Jenny. “You don’t go from fighting something like this to giving up.” Instead, they turned to St. Jude. Within days, she and her family had arrived in the United States.

At St. Jude, Phoebe underwent a natural killer (NK) cell transplant in December 2011. NK cells are special cells in the immune system that target cancer cells.

“Traditional treatment hadn’t worked,” said Jenny, who served as her daughter’s NK cell donor. “We knew we needed something more.”

Within weeks of her transplant, Phoebe was in complete remission.

Phoebe’s treatment has also included physical and occupational therapies. “Before we came to St. Jude, Phoebe wouldn’t stand on her own, and now she’s standing,” said Jenny. “She basically had an NG tube her entire life. Now she doesn’t. She’s eating, she’s talking. Here at St. Jude, it’s about treating the whole child. It’s amazing.”

On a recent afternoon, Jenny and Jon watched Phoebe and her older sister, Mae, color. Free of her NG tube, Phoebe took a handful of orange, animal-shaped crackers, lined them up carefully on the coffee table in front of her, and ate the crackers one-by-one. By the time she was finished, orange cracker crumbs littered the front of Phoebe’s shirt and the floor beneath her. There were crumbs in her hair and on Mae’s artwork.

Jenny and John love these normal moments.

“We’re looking forward to being at home and doing every day family things, like bike rides and picnics,” Jenny said.


In May 2012, after completing treatment, Phoebe and her family returned to Canada. After a summer spent playing and swimming, Phoebe’s family was devastated to learn in late 2012 that the cancer had returned. At St. Jude, Phoebe underwent 10 days of radiation therapy. She’s now continuing chemotherapy at home.

 

 

May 2012

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