When I was five years old, I was diagnosed with acute lymphoblastic leukemia (ALL). It is the most common type of childhood cancer and curable in 90% of children with standard treatments; however, that was not the case for me. My childhood was halted by my diagnosis and transformed into a whirlwind of appointments, blood draws, and extended stays in cramped hospital rooms.
Unfortunately, the traditional chemotherapy used to treat ALL was not effective for my rapidly progressing cancer. It was spreading through my body like a plague, infecting not only my bloodstream but the time I should have spent making my lifelong friends in elementary school and learning to read and write. I ended up relapsing twice, and my parents were told that it was time to send me home on hospice care and enjoy the days they had left with me. However, we did not give up.
My mom has a background in research from working at Penn State University. She learned of a Phase 1 clinical trial––meaning the treatment had never been tried in anyone before¬¬––at the Children’s Hospital of Philadelphia (CHOP). It was called CAR-T cell therapy. As a young child it was explained as follows: A machine will remove my T-cells, a type of white blood cell, from my blood in a process called apheresis. Then, the cells would be sent to bootcamp to be trained to fight my cancer. This army of cells would be infused back into me, ready to fight. In reality, scientists would genetically modify my cells using an inactive form of the HIV virus, giving them the ability to find and kill cancer cells. Miraculously, the treatment was approved to be tried on a child just when my family and I were running out of options. I became the first child in the world with my immune system trained to fight cancer on April 17, 2012.
Since I was the first, my doctors could not predict what my reaction would be to the modified T-cells. After I received the cells, I ran a high fever and was admitted into the intensive care unit. At that time, three pounds of my bodyweight was cancer. The T-cells were killing the leukemia cells so fast that it overwhelmed my body. I spent 14 days in a coma fighting for my life with the support of my family, friends, and child life specialists.
Against all odds, I awoke on my seventh birthday, May 2, 2012. Eight days after on May 10, 2012, I was declared cancer free. To put this into perspective, I had 22 months of failed chemotherapy and was cancer free only 23 days after receiving CAR-T cell therapy.
Today, I am 17 years old and a senior in high school. I have no prolonged side effects other than an immunodeficiency since the T-cells are still active in my body looking for cancer cells, hence the term often used by the medical field “living drug” to describe the therapy. My family and I created the Emily Whitehead Foundation to raise awareness of CAR-T cell therapy and less toxic cancer treatments as opposed to their traditional counterparts like chemotherapy, bone marrow transplant, and radiation that can cause lifelong side effects. I have always loved learning and even kept up with my schooling while in the hospital. In fact, I was able to stay with the class I started kindergarten with by continuing my love of reading and writing in the hospital.
In my junior year, I was inducted into the National Honor Society (NHS), and I have found that embracing leadership and character is something I value and practice daily. My family and I travel the world to share my story and have raised over two million dollars for pediatric cancer immunotherapy research! On May 10, 2022, I celebrated 10 years cancer free and was officially declared cured by my doctors.
My family and I have published a book, Praying for Emily: The Faith, Science, and Miracles that Saved Our Daughter, that tells our story. And we have a film, Of Medicine and Miracles, that recently premiered at the Tribeca Festival. I use the platform I have been given to advocate for pediatric cancer research and inspire people my age to pursue STEM careers to make more innovative treatments like the one that saved my life. I hope to continue to embrace the values of NHS through my advocacy work and inspire others my age to do the same. On my journey, I have learned it doesn’t matter where you’re from or who you are. You can truly make a difference if you put in the work and are dedicated to the cause.
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