Praying for Emily

this time, we were thinking that we could use all the attention Emily’s story was getting to start a foundation in her name. We wanted to bring news of the treatment to a broader audience of parents who were at the exact place we had been: given a hopeless diagnosis and told to move their child to hospice. Between ten and twenty times a month, parents from around the country (and, later, from around the world) called me to ask if their child’s situation was like Emily’s, or to ask for a referral to a doctor or a hospital that could offer them the same therapy. I always take those calls. As I remembered from those afternoons with the other pediatric cancer parents in the outpatient oncology clinic, and from that grandmother at the family lounge in those first days at Hershey, only we knew what each other was going through. We needed to be kind to everyone we met.

The other goal of the foundation was to fund research for less-toxic treatments for pediatric cancer. We knew a lot of cancer foundations were raising money off the bright news of Emily’s survival, but some of them didn’t donate to pediatric cancer research. We talked about setting up the Emily Whitehead Foundation, but we weren’t sure when would be the right moment to launch. I was the one who was gun shy, but Kari had better sense than me. She was listening to her whispers. I’m the one who is always forwarding positive memes and sayings, so much so that it can get to be a little annoying. While I was hemming and hawing, Kari sent me a meme! It said, “What some people see as obstacles others see as opportunities.” That was all it took for me to decide. We launched the next week, and a few days later Emily was invited to the White House, a great sign that our timing was perfect.

When I was teaching Emily to walk again on the bone marrow transplant hallway, I used to tell her that what she had done to fight cancer was so big, so earthshaking, that one day she would meet the president. You can imagine the eye roll I got from her when I said that! But sure enough, when President Barack Obama announced his Precision Medicine Initiative with strong bipartisan support, he invited Emily to come to the White House. We could see why her story fit perfectly into this event. It was so promising that it was the kind of approach that gave people hope that we actually could cure cancer. Also, I was bursting with pride for another reason. Any dad can tell his daughter she’ll meet the president one day, but my prediction came true!

2017 was Emily’s five-year anniversary of being cancer-free, and at her check-up with Dr. Grupp he pronounced her cured. Just a few months after that, the FDA approved CAR–T cell therapy for use nationwide. Since then it has been approved in several other countries. In our little corner of Pennsylvania, we all felt like we had a piece of that victory, no one more than Emily.

What we had wanted for Emily was a normal, small-town life, but fate did not agree with that modest goal. She’s had something much different in the last eight years, meeting celebrities and world-famous leaders, appearing on television, and speaking before thousands of people. Our families are still the same, still supportive, loving, squabbling, and knit even closer together than before because of what we all went through when Emily got sick. Becky and Ariana are still Emily’s dear friends, so much so that Emily was a bridesmaid at Becky’s wedding. Every time we go to New York City (which is now one of my favorite cities!), the three of them sneak off together with plans of their own, and it makes me so proud that that relationship continues. Emily can look to those two young women as role models for what Kari and I envision for Emily.

Our foundation is five years old now and has raised more than $1.6 million. In 2017 we held our first Believe Ball, named after the #WeBelieve hashtag that rocketed around the country when Emily was close to death. At the ball, we honor the doctors and researchers who developed CAR–T cell therapy and who care for pediatric cancer patients. We also honor the patients and their families. We’re holding another Believe Ball in fall 2021.

Every time I’m asked to tell Emily’s story, I do it with pride for how we got through it and pride in the amazing young woman Emily is today. I might tell that story fifty or more times in a year with all the speaking I do, and every time I do, I break down in tears. It is as if it was happening right now, the feeling of it is so powerful to me. I’ll never forget what happened, and if it chokes me up to talk about it, so be it. It’s too important not to talk about it if it could save the life of another child.

To learn more about the Emily Whitehead Foundation please visit www.EmilyWhiteheadFoundation.org.

AFTERWORDby Emily

Since I got well, my family has traveled the world to help promote the treatment that saved my life. My story has inspired many and made them feel close to us, even if they have not met us. Everywhere we go, somebody recognizes me. From strangers on a plane yelling. “Oh my god! Emily’s on this flight!” to people telling me how they found out about my story. It never gets old. I love to hear how my story has inspired others. Many people are taken aback by how much I have grown. Eight years later, people are still baffled that I’m not a seven-year-old girl anymore. It still baffles me that people of all ages admire me, and say that I am their