Emily Whitehead was the first child cured of cancer with therapy from Penn. She’s back as a freshman.
She was the first child treated with CAR-T, a therapy that engineers the immune system to fight cancer, at the Children's Hospital of Philadelphia in 2012.
Emily Whitehead first came to the University of Pennsylvania campus as a 6-year-old dying of terminal cancer. She left a medical celebrity — the first child cured of leukemia with an experimental therapy that represented a breakthrough for cancer treatment.
Eleven years later, she’s back under very different circumstances.
Now, she’s come to Penn for a quintessential coming-of-age adventure: moving away from home for the first time, trying new things, meeting new people, figuring out what she might like to do as a career.
Few of her classmates know that former President Barack Obama once penned her a school absentee note; Lady Gaga serenaded her on stage; and documentarian Ken Burns wrote the foreword to a memoir she published with her parents.
She decided not to share her story unless asked. Two of her five roommates approached her after seeing a photo of her with a celebrity (Emily doesn’t remember which), but she’s yet to detail her entire experience to them.
By choice, Emily blends in as she weaves through her classmates on her way to her favorite study spot, a quiet covered patio outside the student union Starbucks.
No one looks up at her as she makes her way to an empty picnic table with a venti iced brown sugar shaken latte (her favorite) and opens her laptop to review class notes.
No one whispers, “She’s the one who was on Good Morning America last month.”
CAR-T advances cancer treatment
Emily was diagnosed with acute lymphoblastic leukemia when she was 5 years old. She lacked the energy of a typical kindergartner and had bruises that no one could pinpoint to a game of tag or bicycle tumble. At night, her gums bled no matter how gently her parents brushed her teeth.
Her mother, Kari Whitehead, knew something was wrong when Emily woke up one night crying in pain for no apparent reason. The next morning, she brought Emily to the pediatrician, who sent them directly to the hospital.
Acute lymphoblastic leukemia is the most common type of childhood leukemia. About 90% of children treated are still alive five years later, and many never see their cancer return. Chemotherapy initially helped Emily, but after relapsing twice in two years of treatment, doctors concluded that her cancer was resistant to the therapies available at the time.
Doctors told Kari and her husband, Tom, to take their daughter back to their home in Philipsburg, outside State College, and love her for whatever time she had left to live.
Instead, they brought Emily to the Children’s Hospital of Philadelphia. Doctors there had just been approved, months ahead of schedule, to begin a pediatric clinical trial for an experimental treatment attempting to train the immune system to attack cancer.
The approach is called chimeric antigen receptor T cell therapy, or CAR-T. It involves removing the body’s T cells — the white blood cells with a leading role in the body’s immune response — and genetically modifying them to target the blood cancer. Then, the cells are reinfused into the body.
» READ MORE: Penn’s Carl June splits a $3 million Breakthrough Prize for pioneering the cancer treatment CAR-T
Cancer scientist Carl June pioneered the technique at Penn, and his team treated their first adult leukemia patients in 2010.
Emily became the first pediatric patient in 2012.
The treatment almost killed her by overstimulating her immune system and causing an uncontrolled inflammatory reaction. Within hours of her first infusion, Emily was having trouble breathing, her blood pressure was abnormal, and she’d spiked a fever.
Doctors identified a medication that would target the inflammation. On her seventh birthday, she emerged from a medically induced coma.
“She woke up,” June recalled in the digital short, “Fire With Fire,” about Emily’s case, “and there was no sign of leukemia.”
The first child cured of leukemia
Her case was celebrated as a breakthrough in cancer treatment, enabling children once considered terminally ill to return to a “normal” life.
For Emily, though, life was never “normal.” She doesn’t remember much about her childhood before leukemia. After she was cured, her life was far different than her peers’.
The family was inundated with interview requests, invitations, and opportunities that have taken them around the world.
» READ MORE: The face of a medical revolution marks five years cancer-free — and her 12th birthday
Emily’s face — pale from cancer treatment, posing with chalkboard signs marking another year cancer-free — has been splashed across television screens and magazine pages more times than she can count over the last decade. In time, her smile was dotted with braces, then framed with a graduation cap.
Medical celebrity is a role Emily didn’t ask for. Still, she has enjoyed advocating for children with cancer and showing the world the life that can follow cancer.
“It’s a privilege,” she said. “Sometimes it’s overwhelming. It actually is both.”
After more than a decade, Emily is no longer unique. At least 20,000 people have received CAR-T treatment, with success rates ranging from 50% to 90%. CHOP recently treated its 500th pediatric CAR-T patient. Of these, at least 70 children have lived at least five years with no signs of cancer.
Emily now wants to find ways to support cancer patients aside from retelling her own story time and again.
“Cancer survivors have more to them than their stories,” she said.
Finding her place at Penn
Freshman year at Penn is the first time Emily can remember that “cancer” has not defined how people see her.
Strolling under a leafy canopy on Penn’s campus, Emily talks about her favorite classes this semester: climate fiction and American Sign Language.
She hasn’t declared a major but is interested in English, the environment, and nature photography.
She picked up one of her mother’s cameras during the pandemic and started snapping pictures of the gardens in her yard and the wildlife in a nearby state park. She likes to take close-ups of the veins and tiny hairs of a leaf, or a droplet of water about to fall from a branch.
It might sound cliché, Emily says, but as someone who wasn’t expected to live to the age she is now, she appreciates the beauty of everyday objects.
She wants her art to encourage others “to admire even the small things,” she said.
When it came time to select a college, Emily considered Penn State, which is closer to home, but ultimately chose University of Pennsylvania because it offered a broader range of programs.
Plus, she said, “this is the only other place that feels like home.”
Her doctor was wary of her living in the dorm — especially after the COVID-19 pandemic — but Emily insisted. They compromised on a six-person suite in one of Penn’s student towers in which Emily has her own room.
As an only child, living with five other students has been a change. She’s enjoying getting to know her roommates, who come from the Midwest, Bahrain, and Australia.
They’re in awe of some of the celebrities she’s met, but they don’t pressure her to share more than she wants. In the dining hall or at a restaurant or sitting around in their shared living room, she talks with them about their classes, professors, and weekend plans.
Pediatric cancer advocacy
After her classes one Wednesday in September, Emily walked over to CYTO | PHL at the Cira Centre, a life sciences center near campus where the foundation bearing her name was holding a small fundraiser.
The Emily Whitehead Foundation has raised more than $2 million to support pediatric cancer research and help families connect with clinical trials. Emily’s parents started it to fulfill what they describe as a calling to help the families from all over the world, who began reaching out after learning of Emily’s successful treatment.
Lately, her father takes most of the speaking engagements for the foundation while Emily focuses on her studies. They’ve organized more events in Philadelphia, so Emily can participate without taking time off school.
Emily didn’t stay for the panel discussion at the foundation’s latest event, but before leaving, she posed for photographs with her parents, foundation donors, and a 5-year-old cancer survivor who recognized her.
Standing between her parents at the edge of the cocktail reception, she sipped ginger ale as doctors and researchers paused to introduce themselves and tell her: “Your story is so inspiring.”