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The face of a medical revolution marks five years cancer-free -- and her 12th birthday

How to use unexpected celebrity to do good? Tom and Kari Whitehead have become leading advocates of the breakthrough immunotherapy that saved their daughter Emily.

Emily Whitehead and her parents, Tom and Kari, who say they want to strike a balance between intensive advocacy and normal life.
Emily Whitehead and her parents, Tom and Kari, who say they want to strike a balance between intensive advocacy and normal life.Read morePat Little

Last week, Emily Whitehead celebrated her 12th birthday by making a cake and decorations with her mother, then having a sleepover with four of her BFFs from middle school.

Because she's growing up, the straight-A sixth grader also did something that her parents usually handle: She talked to a reporter about what it's like to be a cancer pioneer.

"I think it's kind of cool because I get to go to a lot of places and meet a lot of people," said the tween who, has hobnobbed with scientists, stars, and statesmen, including then-President Barack Obama.

At an age when most children have not even thought about cancer, much less about harnessing the immune system to fight it, Emily knows she is the poster child for an oncology revolution. Yet she is also a regular 12-year-old, as excited by her birthday party as by Wednesday's fifth anniversary of her remission from terminal leukemia. The experimental treatment that saved her at Children's Hospital of Philadelphia is now under review by the U.S. Food and Drug Administration, poised to become a first-of-its-kind drug made by pharmaceutical giant Novartis.

As Emily chatted with a reporter, her parents, Kari and Tom, sat nearby in the enclosed porch of their comfortable home in Philipsburg, half an hour from State College, Pa.

The Whiteheads have walked a careful line between ensuring as normal a life as possible for their daughter, and remaining visible advocates for the science that rescued her. They created a foundation in her name to support pediatric cancer research and help other desperate families.

The challenge, they have discovered, is that advocacy can be as all-consuming as fighting the disease head-on.

"We feel we've been given so much and everything came together. We're so grateful for that," Kari Whitehead said. "We want to give back in some way. At the same time, it's hard to balance. We don't want to spend all this time on the foundation when it's taking time away from Emily – when all this has given Emily back to us. So we have to keep that in mind."

A 10-pound baby girl

Kari, 41, a nutrition research manager at Pennsylvania State University, and Tom, 47, a power company lineman, grew up in the middle of the state and met on a blind date in 1998. They married in 2001 and welcomed Emily four years later.

"She weighed 10 pounds and had a full head of hair," her father said, chuckling.

Today, it's hard to believe that thriving baby missed a beat between then and now. In a YouTube video Emily made last month, her thick brown hair falls over her left eye and a rosy cheek: "Hey, what up, guys! It's your girl Em here. Today I'm going to show you how to make this amazing fabtastic spastastical pink Easter slime!"

But online news clips and cancer documentaries – including Ken Burns' acclaimed six-hour PBS series on the history of cancer – show Emily at her nadir in April 2012, when she was 6. She had relapsed twice in the almost two years since her diagnosis, despite relentless rounds of toxic chemotherapy. Malignant blood cells were growing uncontrollably. She lay in a bed at Children's Hospital, bald, thin, circles under her eyes, a tube in her nose.

That's when the experimental therapy was dripped into her vein, a historic moment that her parents had the presence of mind to videotape.

The treatment had never been attempted in a child. In the six adults in whom it had been tried, two had dramatic remissions, but their blood cancers were not the same as Emily's. Built on 20 years of research led by the University of Pennsylvania's Carl June, the therapy involved genetically engineering Emily's T cells, the soldiers of the immune system, to attack her B cells, other immune cells  that turns malignant in certain blood cancers.

Or as Emily explained in a soft but confident voice: "They took out some of my blood cells and put them in a machine that trained them to kill the cancer. Then they put them back in me. That's what saved me."

First, though, it almost killed her, triggering a catastrophic immune overreaction. Her doctors threw the medical version of a Hail Mary pass, giving her a new immune-modulating rheumatoid arthritis drug that June had heard about.  That drug would become a vital part of the immunotherapy protocol, enabling doctors to manage potentially lethal side effects.

Emily regained consciousness on May 2, her seventh birthday. Eight days later, on May 10, 2012, her Children's oncologist, Stephan Grupp, declared her cancer-free.

Balancing advocacy and family

The engineered T cells are not infallible, and the approach, being tested by research centers around the world, has not yet worked well in solid tumor cancers. But Novartis' version has saved children and adults who were out of options in fighting B cell malignancies. About half the 175 youngsters treated so far at Children's have achieved lasting remission.

Does Emily ever talk to classmates about her ordeal?

"Sometimes. Not very much," she said.

"She's blocked out the painful stuff from her memory," her father chimed in. "We've asked the school not to talk about it. We want her to be normal. People around here are good about not bringing it up."

But cancer charities, medical societies, documentarians, and families desperate for their own miracles have never stopped calling.

In 2014, the couple set up the nonprofit Emily Whitehead Foundation. The foundation has raised $350,000 in barely two years, enabling Grupp's team to engineer T cells that target novel leukemia markers, thus extending the therapy to more children. "The funding has been incredibly important," he said.

Still, the foundation's success has come at the cost of family time. That's why the Whiteheads hope to hire an executive director by the end of the year – and why Kari Whitehead has scheduled an Ocean City summer vacation with extended family "and no media."

They also recognize that, although Emily may be excited to meet pop star Katy Perry or movie star Bradley Cooper (to name a few), talking about cancer could remind her of the children she bonded with in hospitals who didn't make it. Besides, as Emily once told an Access Hollywood reporter, sometimes telling her story "gets pretty boring."

"So our deal," her father said, "is that if we go to somebody's event and talk about Emily's treatment, then they have to do something separate from the event that's fun for Emily. We never want it to become a downer, where she's thinking, 'Oh, we have to go and talk about it again.' "

Billionaire tech guru Sean Parker understood. He put the Whiteheads up in an iconic Southern California beach resort before they attended the star-studded April 2016 gala that launched his eponymous Institute for Cancer Immunotherapy. (Penn is part of the institute's $250 million research collaboration.)

The gala is where Emily met her most memorable celebrity.

"I think that would be Lady Gaga," she said. "She brought me on stage and sang to me."

"Emily is a very poised young lady," said Grupp, her oncologist. "If she's been spoiled by the attention, I see no evidence of it."

But she can be a typically sassy adolescent, too, rolling her eyes and muttering that her mother didn't shut down a laptop computer game properly before pulling up a video of Lady Gaga's crooning.

Will she become a rebellious teenager?

Emily paused before answering: "I don't know."

Although her cancer treatments have left no apparent side effects, she needs a two-hour infusion of an immune-boosting drug every other week. The T cells that even now remain on guard wiped out her B cells – healthy as well as malignant.

"We use numbing cream on my legs," she said. "My dad puts the needles in and prepares the medicine."

Does she fear the cancer might come back?

"Not really, because it's been gone for so long," she said.

Her parents exchanged a quick look. After five years, they no longer worry every day.

"Just every night," Tom Whitehead said.