AFTERWORD

by 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 hero, for a part of my life that I do not remember a lot about. My parents gave up everything for me, and being in the hospital for so long made us close. I am extremely grateful for my life, and the memories I would not have if I had not made it out of the hospital. Currently, I am a typical teenager that has just a few more life experiences than the kids in my grade.

One of the things that was most important to me during my years in the hospital was Lucy. I hazily remember the day she visited me in the hospital, but I know that she made me want to recover and come home so that I could see her again. Before I became sick, I had begged my parents for a dog. Being the strong-willed child I was, I was determined. That begging came to a halt when I was diagnosed, but it left a lasting impression on my parents. They had seen how quickly the kids’ moods would change as soon as they saw one of the therapy dogs come onto the floor at Hershey. That inspired them to get me Lucy. I don’t remember the day she was given to me, but I remember how close we became in the following years. Unfortunately, Lucy passed away in June of 2019. She had heart and lung issues that led us to having to put her down. My dad even drove her to Philadelphia to see a special veterinarian to see if anyone could fix her. Lucy and I had a special bond that left quite the impression on my family. She grew up with me and helped me through a very rough time in my family’s life. In my heart, this book is dedicated to Lucy.

My dad understood how much I needed Lucy and was always trying to find ways to have her visit me at Hershey and CHOP. Besides being the person that made me laugh every day, he also enjoyed tricking me.

Whenever I had enough energy, my dad would walk me down to the playroom at Hershey, dragging my IV poles for me so I could feel somewhat free. I called him my IV boy because I always refused to drag the poles myself. The playroom had glass walls on the back, overlooking the woods and buildings surrounding the medical center. There were crafts, games, and even a Nintendo Wii lined against the front wall. These are regular activities for any sick child in the hospital. Although these activities were fun, directly outside of the glass walls entering the playroom stood a neon-green-and-blue air hockey table. While the other kids played inside the playroom, I would play intense games of air hockey with my dad outside of the playroom.

Any chance my dad could get, he tricked me. His tricks ranged from saying Lucy was behind me, to trying to convince me that my mom needed me. During our first competitive days at the hospital, I would always turn around. He would chuckle and score the puck into my goal. As I grew more accustomed to my stay at the hospital, I became more focused on every game of air hockey we played. It wasn’t long before I caught on to his tricks and outwitted him myself. Today, my dad and I play air hockey games on any air hockey table we can find and, of course, still use the same tricks.

Besides playing air hockey games with my dad, I needed some entertainment in my hospital room when I was put in isolation for having a low immune system. Typically, books and stuffed animals kept me occupied in those long hours trapped in that small space. On one of my mom’s posts, she explained my obsession with stuffed animals and reading. Little did we know what was to come. A few days after that post, I received hundreds of books and stuffed animals from our supporters on Facebook and CaringBridge. My mom and I read those books back and forth to each other throughout the rest of my treatment. The support we received was amazing and inspired me to keep fighting.

After I relapsed, I became a different kid. I was bald and I had a better medical education than many adults. I could even explain the medications I needed and why I needed them to my nurses and could change out my own syringes. I received steroids that made me shout so noisily that the entire oncology floor could have heard me threaten to fire the group of nurses who came in to see me. That girl that was in the hospital did not feel like me.

One day, I felt as if I needed a change. I decided to tell everyone to call me Emma. For the next two years, that was my name. After I came home from the hospital after CAR–T cell therapy, I started to feel like myself again. I knew that I could go back to being Emily. I never understood why I did this until I became older. Now I recognize that I needed some way to separate the real me from who I was in the hospital. When I changed my name back to Emily, I left my past behind me in the hospital. Emma was that sick girl in the hospital, with no hair, who played air hockey at the playroom. She fought relentlessly until the very end and overcame any obstacle that faced her. As soon as I became Emily, I started to share my story with the world, and that is who I am today.

Being the first child to receive CAR–T cell therapy, I’ve been able to experience things the majority of people don’t get to experience in their entire life. I’ve traveled to Switzerland, France, Germany, Canada, Norway, and Sweden. With all the trips we’ve taken to promote CAR–T cell therapy, I’ve discovered that I really enjoy traveling, especially overseas. Out of all of the places I’ve traveled to, Switzerland really had an impact on me. My first trip to Switzerland was in June of 2015, three years after I came home from the hospital. When I boarded the plane to endure the eight-hour flight, I did not know what was to come.

When we were about to land, I decided to pull up the window shade for the first time since we had taken off. The glare of the morning light lit up the cabin as my eyes adjusted to the new landscape. I remember the mountains with their snow-peaked tops and the blanket of green trees wrapping around them, so tall that their peaks touched the clouds. I had never seen anything like that until I pulled up that window shade. It seemed like an entirely different world from the rolling hills of Pennsylvania. I’ve been to Switzerland twice and got to explore the Swiss Alps, see cows wearing bells, and eat some of the best food I’ve ever had.

Besides traveling around the world, I have met some pretty neat people. While I was in the hospital, my dad always told me he knew that I was going to meet the president someday. My mom would tell him to stop telling me that, but he seemed determined, like he somehow saw it happening. In 2015, my dad received a call from an unknown number while he was working in his bucket truck. The caller explained that President Obama mentioned me in his Precision Medicine Initiative, his campaign to promote cures like mine that individually tailor the genetics, environment, and lives of people who get sick. He wanted me to be there for his next speech! I think my dad almost dropped his phone out of his hand. A few weeks later, I was able to meet President Obama. He even signed my school excuse slip so the teachers would not doubt the reason I was absent. It was an amazing experience that I’ll never forget.

A year later, Sean Parker, a Silicon Valley investor, was inspired by the death of a close friend to start a cancer immunotherapy foundation, the Parker Institute for Cancer Immunotherapy. He invited my family and me to come to a fund-raiser at his home in Beverly Hills. There, I met people like Katy Perry, Bradley Cooper, and Lady Gaga. Usually, my dad would tell my entire story and let people meet and talk to me after, but that night I had my first small speaking part. I was nervous to speak in front of such a large crowd, especially one filled with celebrities, but I was determined to do just as well as my dad did during his speeches. After saying a few words onstage and eating a good meal, Lady Gaga came out onto the stage and began singing “La Vie en Rose,” the same song she later sang in A Star Is Born. While she was singing, my dad pointed down at me and she pulled me up onstage and sang to me in front of the crowd. It felt like a dream. I watched her twirl her scarf around onstage and dance next to the trumpet player as the crowd swayed and cheered her on.

Another gala that we attended was for TIME magazine in 2018. Dr. June was in the top 100 most influential people of the year, and I got to write his tribute. I explained in a few short sentences that he was my hero and had saved my family. At the gala, I was able to meet Millie Bobby Brown and Shawn Mendes and I shook hands with J.Lo. The night seemed like a dream, and it was a remarkable experience.

When I was in the hospital, I found a love for art. I would paint and do crafts to decorate the dull walls of my hospital room, and I never stopped. I still love art, but I’ve also found a passion for film. Throughout all of our interviews and short films, I’ve always been interested in what happens behind the scenes. My love for film became stronger when Steven Spielberg’s team reached out and wanted me to be in his DreamWorks short film about innovative ideas and inventions in 2019. He ended up including my one-through-six-year “cancer free” photos that my mom takes every year on the anniversary of the day the doctors declared me free of the disease.

The film premiered in the Comcast building in Philadelphia on a screen in a large spherical theater specially built just for it. While I was there, I was able to meet Mr. Spielberg and explain my new passion for film. A few months later, he let me spend a day on set with him so I could see what happened behind the scenes. I got to see the actors in action for the remake of West Side Story. The sets were located in a large building that was filled with people. We toured multiple sets that were condensed next to each other, and there was even an entire store that was filled with objects inspired by actual goods from the 1960s. One thing that really interested me was how many people are required to make one movie. There were at least a couple hundred people just in the building working on it, compared to the usual crew of five that came when someone interviewed us at home. It was astounding to see Mr. Spielberg in his working environment. While on set, Mr. Spielberg actually sent a video of him and me together to President Obama on his phone. That was definitely something I will remember for the rest of my life.

When we saw the impact my story had on other people, my family wanted to make a bigger difference. My parents and I created the Emily Whitehead Foundation, which raises money for pediatric cancer patients. We’ve raised over a million dollars and hope to raise more to help families find less-toxic treatments with immunotherapy and get out of the hospital for good. More than 1,000 patients have been treated, and would have likely passed away without CAR–T cell therapy and the money to fund the research. We raise money by hosting a Believe Ball that gathers all of the CAR–T cell therapy patients together for a night to give them an experience they won’t forget. At our first Believe Ball, I brought a group of friends that made it especially memorable for me. Seeing all of the CAR–T cell therapy families gathered in one place inspired me to continue to raise awareness for pediatric cancer and get my story out there even more.

Currently, I go for doctors’ appointments every year and was entered into the survivorship clinic at CHOP. My dad does most of the traveling to conferences, but any overseas trips or visits to California, I’m in on. I go to school with the same classmates I started with in kindergarten. I was able to keep up with my work by reading with my mom and the tutoring I received from the incredible teachers at the hospital and from my local school. I keep up with my schooling even now with my travels. I hang out with my friends and I look forward every day to coming home and seeing our new chihuahua, Luna.

A couple of months after Lucy passed away, we longed to have a dog in our quiet house again. We found several adorable chihuahua puppies online and decided to make a bond with a dog again. I kept the L names and went with Luna, and I am glad I chose that. Lucy’s loving spirit is in Luna’s, and Luna is just as spoiled as Lucy was. Luna always wants to know where I am and gets just as excited as Lucy did when we get home from traveling. Unlike Lucy, Luna is a ball of energy that always keeps us on our toes. Despite her bursts of energy, she still has a love for napping. To represent them both I wear a necklace with a star that represents Lucy and a moon to represent Luna.

Being the first pediatric CAR–T cell patient means so much to me. When I was younger, I could not understand why I was receiving so much attention, but as I grew older, I began to understand how important it is for other families and their kids to hear about my story and make it more accessible around the world. I am so thankful that I was able to be the first pediatric patient for the treatment and help so many other kids make memories that they never would have been able to make. The experiences I’ve had and memories I’ve made are all because of my family, our supporters, and my doctors. I want to continue to spread my story around the world and inspire other young adults to make a difference and stand up for what they believe in. Together we can write a better story for kids and young adults around the world.

In the words of my dad, remember to smile every day. You never know when something could change in an instant.