Emily Whitehead’s life is a series of snapshots that tell two different stories.
There is Emily the small-town Pennsylvania girl who spends lots of time looking down at the screen of her cellphone in its turquoise case, watching Minecraft videos on YouTube and playing with her pomapoo Lucy. Pretty much, your garden-variety 11-year-old.
Then there is the other Emily, the girl who defeated leukemia and has become a lightning rod, attracting electric attention to a whole new way to treat cancer.
Immunotherapy is a way to use a person’s own immune system to fight cancer or other diseases.
There was a time, six years ago, when she was just plain Emily, living in Philipsburg with her parents. Mom Kari took a zillion pictures of her, a pixie with big eyes and giggles for days. But then there was acute lymphoblastic leukemia and everything changed.
Kari coped with her camera, capturing her daughter’s life through her lens. But the pictures aren’t just Emily’s childhood. They show a milestone in cancer immunotherapy. Emily was the first child in the world treated with T-cells specially modified with a virus to attack the cancer cells threatening her life.
“I liked documenting her journey,” Kari said.
And what a journey it’s been.
On May 10, 2012, Emily was at Children’s Hospital of Philadelphia having one more test after a grueling treatment that kept her parents, and the vast network of local, Penn State and online supporters following her story, on edge. The treatment had been just weeks before, a last-ditch trial while the 7-year-old’s options waned and her cancer grew stronger. There were bad moments, scary ones, and while Emily was having a scan, her dad, Tom, was standing just outside when his phone rang.
“It worked,” said pediatric oncologist Stephan Grupp.
Kari saw the stunned look on Tom’s face and thought something was wrong. But “wrong” was over. That was four years ago, and Emily’s tenacious leukemia is still banished.
Emily, on the other hand, is welcome everywhere.
In 2014, more than 1.6 million Americans were diagnosed with cancer, and there were 600,000 deaths, according to the Parker Institute for Cancer Immunotherapy.
Just last month, for example, she was on stage with Lady Gaga, taking selfies with Katy Perry and Orlando Bloom, and being introduced to the glitterati in Beverly Hills by Bradley Cooper. All of that happened at a gala, yes, a gala thrown by tech billionaire Sean Parker to introduce his newest venture, the Parker Institute for Cancer Immunotherapy. The Napster inventor and former president of Facebook put $250 million on the table to build on the way Emily’s cancer was tackled to help more people.
“Emily’s story is very inspirational for us,” said PICI vice president of communications Jennifer Haslip.
Her doctor, CHOP’s Carl June, is one of PICI’s medical voices, a group the institute calls its “dream team.”
“We look for projects we can support and fund that carry over and involve multiple institutions,” said Haslip.
Emily and her parents were among the stars of the evening, but they are getting used to talking about their medical miracle. They have done more and more speeches and appearances since creating the Emily Whitehead Foundation, with the goal of raising money for research and education.
Both Kari and Tom have a singular passion when it comes to helping people. They want people to be able to find and access the kind of cutting-edge trials that they did when Emily’s cancer left them nowhere else to turn.
We want all kids to go home happy and healthy.
“We want all kids to go home healthy and happy,” Tom said.
Just like Emily did.
Four years later, they are still easily spooked by the kind of symptoms that might be brushed off by parents who haven’t lived in a hospital hallway for weeks on end, watching their little girl in pain. Just the day before that anniversary, they were checking on some run-of-the-mill things that meant cancer when she was in kindergarten. Today, their local oncologist assured them, there is nothing to worry about.
Emily doesn’t remember the bad stuff. But she doesn’t have a black hole in her memory. The good stuff, that’s all still there.
What is the memory that stands out from the dark days?
“Thon,” she says immediately.
Emily had a second family clustered about her through it all, her clan from the Penn State IFC/Panhellenic Dance Marathon, the university student-run charity devoted to pediatric cancer. She attended in 2011 as a kid actively dealing with illness. She was too sick to go in 2012, but her Thon family brought the magic to her. She was back on the floor in 2013, and it meant the world to her.
Ask her what her favorite moment has been since getting better, and Katy Perry and Lady Gaga take a back seat to dancing at the Bryce Jordan Center again.
But still, Emily goes to events and tells her story, even though she would like to be playing games with her friends, checking in on those block-shaped worlds on Minecraft and rubbing Lucy’s furry belly. Sean Penn asked her at the gala whether she would rather be a normal kid or if she wanted to be helping people. She said she wanted to help.
“So they can be home with their families and play with their friends,” she said.
She says it with an easy smile and slightly puzzled eyes. It’s a picture that clearly says “why else?”
Cancer funding gets big boost
The Parker Institute for Cancer Immunotherapy wants to not just change how cancer is treated but how cancer research is funded.
“The goal is to bring treatments to patients much faster,” said Jennifer Haslip, PICI’s vice president of communications.
To do that, they want to use their medical leaders to find the most innovative projects with the most potential that could benefit by a massive infusion of cash.
Haslip said the “goal is to remove some of the barriers that come with traditional grants.”
“By being efficient and working across centers, the hope is that we can make the money go further,” she said. “We are also working with partners in industry.”
Major institutions involved in the push include the University of Pennsylvania, the University of Texas, UCLA, Stanford and the Memorial Sloan Kettering Cancer Center.