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
