“Emily, don’t let Lucy lick your face!” Kari said, ever watchful of germs, but there was no interrupting this moment. Emily was suddenly filled with energy, most of it provided by Lucy.
As we continued home, there were people lining the streets along the country road that leads up to our house, at the turn up the hill leading to our street, and down the block, all the way until we pulled into our driveway, where the local news station reporters and their cameras stood there to greet us.
As we helped Emily out of the car, Lucy was running back and forth, her tail wagging. Emily picked up Lucy and gave her another kiss. There would be no interviews that day, at least not for Emily. Inside, the whole family was waiting to welcome her.
At last Emily had come home.
Epilogue
WHAT’S HAPPENED SINCE EMILY CAME HOME
Last year, our family flew to Miami, as we now do most years, for a world stem cell conference that brings together doctors, scientists, CEOs, and hedge fund managers from around the world interested in finding out the latest advances in the CAR–T cell therapy that saved Emily. After we tell our story to the crowd, the conference organizers usher us onto a large yacht, one that can hold hundreds of people, which sails down the Miami River in the moonlight. At the banquet, we were seated next to a CEO who had heard my talk, and he beamed with excitement as he swept his hand around the large crowd. “Without Emily Whitehead, none of this is possible,” he said.
I am proud of my girl in so many ways. First off, I’m proud of her for just being her, the same strong and spirited girl she was before she got sick, the same girl who never gave up and the one who changed the way doctors treat cancer. If Emily hadn’t survived, this treatment approach that already has saved hundreds of lives would have been delayed by years, perhaps decades. If a healthy young girl like Emily was not able to get better, scientists might have given up this research, at least for a while, if the treatment put patients at risk. But the fact that she survived, and continues to thrive, gave doctors the freedom to treat more patients with CAR–T cell therapy, and to begin researching the use of CAR T cells on other forms of cancer.
When we got home that June afternoon in 2012, none of this was certain. Yes, Emily appeared to be cancer free, but there were anxious moments at every checkup when we wondered if the CAR T cells were still in there, still fighting off Emily’s leukemia. Every time we took her to the doctor, we confirmed that she was still cancer free. In December of that year, Dr. Grupp presented the results of the first few patients treated with CAR–T cell therapy, Emily among them, at a meeting of the American Society of Hematology. This was what led to her being featured on the front page of the New York Times, where they accurately depicted our daily joy in Emily in the first paragraph of the story, describing her somersaulting around the house and taking tumbles that “made her parents wince.”
The reaction to this article was huge! More than 550 articles were published in the U.S. about Emily’s treatment in the two weeks after the Times article. Hundreds more were published around the world. From that moment on, our family was called upon to speak to large groups and small ones. We told the story of Emily’s miraculous cure with CAR–T cell therapy and spread the word about this lifesaving treatment. Many times when we spoke, the scientists who work in the laboratories, the front line for this research, would echo what the head of the National Institutes of Health (NIH) told us. When NIH director Dr. Francis Collins invited us to lunch, he told us he kept a picture of Emily on his desk as a constant reminder of why he came to work every day. Other scientists and researchers told us that, too.
Something about the magical nature of the cure, and of Emily’s story, kept drawing attention her way. General Electric sponsored a series of short films, called Focus/Forward, that features new ideas in science. They commissioned one on CAR–T cell therapy and Emily, called Fire with Fire, by Oscar-winning director Ross Kauffman. It has been viewed more than 20 million times.
Emily’s cure was a big boost as well for Dr. June, who had relied on grants and philanthropic contributions to finance his research. With the publicity generated by Emily’s and others’ survival, big pharmaceutical companies came courting, wanting to license CAR–T cell therapy for worldwide distribution. He chose Novartis to be his partner. The company contributed $20 million to Dr. June’s research, financing a huge new facility for him affiliated with the University of Pennsylvania called the Center for Advanced Cellular Therapies (CACT). It has 24,000 square feet of lab space, 6,400 square feet of clean room space, and 100 scientists who can tailor treatment for 400 patients a year. When the center opened in 2016, Dr. Levine, the scientist who grew Emily’s cells, joked that Yankee Stadium was the house that Ruth built, but Emily built CACT.
The desire to celebrate this novel approach to treating cancer kept our whole family on the go, speaking at conferences and to researchers, scientists, and pharmaceutical and biotech companies around the world to inspire their workforces. Everyone was eager for this story, including VICE, which did a program on new kinds of precision cancer treatments, including Emily and CAR–T cell therapy, in 2015 called VICE Special Report: Killing Cancer. And we got to know and become friends with documentary filmmaker Ken Burns when he featured Emily’s story as the last segment in his PBS documentary Cancer: The Emperor of All Maladies.
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