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The Girl Who Lived: The Emily Whitehead Story

car t-cell-cancer treatments-leukemia-immunotherapy-pediatric cancer
car t-cell-cancer treatments-leukemia-immunotherapy-pediatric cancer
Photos Courtesy of the Emily Whitehead Foundation

When traditional cancer treatments failed, the Whitehead family turned to CAR T-cell for their young daughter — and found a miracle.

“Emily was perfectly healthy until just after her fifth birthday,” Tom Whitehead says. “It was Memorial Day weekend in 2010. Looking back, we noticed bruising all over her. My wife said that twice when Emily was brushing her teeth, she saw blood on her gums and she had terrible knee pain.”

Emily was diagnosed with acute lymphoblastic leukemia (ALL), and initially the Whiteheads were almost relieved. “It’s the most curable of them all,” Tom says. “There’s a 90% chance.”

Emily was treated and went into remission. The Whiteheads thought their nightmare was over, but 16 months after her diagnosis, her cancer returned.

CAR T-cell immunotherapy

Doctors now recommended a bone marrow transplant, but they warned that there was only a 30% chance of survival. When the transplant couldn’t be arranged, things looked grim. “They told us to go home and put Emily in hospice,” Whitehead says somberly. “I said, we’re not going to do that.”

Emily’s doctor told them that a clinical trial for CAR T-cell immunotherapy had just opened, and they signed Emily up the next day. CAR T-cell immunotherapy is a process where a cancer patient’s own immune cells are extracted from their body, genetically engineered to target cancer cells, and then put back into the patient. The T-cells target cancer cells in the blood, destroying them.

Emily Whitehead is 10 years cancer-free.

In 2012, CAR T-cell was untested and cutting-edge medicine, and Emily experienced terrible side effects. “They ended up putting her into a coma and putting her on a ventilator,” Whitehead recalls. “That was pretty brutal. There was one night when the head of the PICU came in and said, ‘Tom, there’s a one in 1,000 chance she’s alive when the sun comes up.’”

Emily made it through the night. “She woke up on her seventh birthday, May 2012. It was eight days after she woke up that they retested her bone marrow and there was no leukemia. We did 22 months of failed standard treatments, and then 23 days later, she was cancer-free after we tried CAR T-cell therapy.”

A family mission

Emily was the first pediatric cancer patient to be treated with CAR T-cell immunotherapy, and her miraculous recovery made headlines. “Ever since then, I’ve been trying to pay it forward,” Tom says. “Families started calling us from all over the world saying they need help. That’s when we started the Emily Whitehead Foundation.”

The foundation raises money (more than $2 million so far) to support CAR T-cell research. Aside from speaking engagements where Tom, Kari, and Emily share their story, the foundation also offers a clinical trial search engine that’s much simpler and easier to use than alternatives. They also organize a Believe Ball every year where cancer survivors, researchers, and healthcare providers can gather to meet, share stories, and celebrate life.

After appearing in documentarian Ken Burns’ 2015 film “Cancer: The Emperor of All Maladies,” Burns wrote the forward to “Praying for Emily,” a book that Tom explains is his attempt to bring faith and science together in the fight against cancer. The film “Of Medicine and Miracles,” focused on the work of Emily’s doctors Dr. Carl June and Dr. Steven Grupp, premiered at the Tribeca Film Festival in June 2022.

Today, Emily is 17, still cancer free, and thriving. She’s learning to drive, looking forward to going to college, and might want to become a filmmaker. For Tom Whitehead, it really is all about paying it forward. “We really want to keep it going and do whatever we can to help this revolution move forward so there are less toxic treatments for patients in the future. We’re very proud of Emily for that.”

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