acute myeloid leukemia (AML)
Cleves, OH United States
On July 18, 2020, I rang a bell in the lobby of the Cincinnati Children's Hospital that signified the end of my chemotherapy treatments and the beginning of my remission. At age 15, I was diagnosed with acute myeloid leukemia (AML). I entered the hospital on December 1, 2019, with dangerously low red blood cell and platelet counts. Before my diagnosis, I was heavily involved in high school, including being the district’s top varsity goalkeeper for women’s soccer, a member of the senior choir and the drama department, a Hope Squad Mentor, a National Honor Society member, and a member of the Gay-Straight Alliance, and I was learning how to drive. My life changed in an instant. My body was failing me. My bone marrow was not producing healthy blood cells.
In the days following, I suffered a transfusion-related, acute lung injury where I almost lost my life. I went through five rounds of chemotherapy overall. My treatments were complicated, and I spent a total of 179 days hospitalized. Throughout that time, I was only able to come home when my blood levels rose to an acceptable level. Most of the time I would be allowed to go home for one week. My longest stay in the hospital was 46 days straight during my fourth round of chemotherapy. However, during this time, I once again nearly lost my life. I had complications arise after my fourth spinal tap and bone marrow aspirate which caused a spinal leak. Typically, this can be fixed with a blood patch, but due to my lack of healthy blood cells and how dangerous the procedure would have been for me, they decided against it. I was told that the leak would heal itself over time, but mine did the opposite. Mine progressively got worse and led to me having two subdural hematomas of the brain and becoming borderline paralyzed and bedridden. I was forced to lay flat on my back and didn’t move from my bed for four weeks. Additionally, I couldn’t eat because of the sores in my mouth from my chemo, and I was unable to use the bathroom for multiple weeks because of the imbalance of my bodily functions. This was one of the most difficult times in my life.
Growing up, my family had never been the kind who had money to spare. We always had everything we needed, and we always eventually got what we wanted, but we weren’t an upper-class family. Going through my diagnosis and cancer battle during the outbreak of COVID-19 caused the hospital where I was staying to no longer allow visitors, making these long months of stress, pain, and fear all multiplied tenfold by the pandemic, and I had to do it alone, visited by no one but my parents and the medical staff. To make matters even worse, I was still a sophomore in high school at the time, completing both online and on-paper schoolwork. Getting diagnosed was the experience that made me come alive ― making me realize how short life is and how much I still wanted to accomplish after only 15 years on this earth. I suffered for 10 months, those obstacles giving me more knowledge and experience that I then learned to use for good once arriving back at high school and my somewhat “normal” life.
My goals include traveling around the world and studying accountability journalism. I hope to use my writing skills to help others get the recognition they deserve when it comes to fighting for their rights, fighting for resources, or just trying to stay afloat in their communities. My overall career goal is to help marginalized or underserved communities around the world feel seen and heard because I know what it’s like to face challenges and have to face them alone. When I was diagnosed, they told me they didn’t know what caused the disease, and that one of my genes had to have mutated. It was nobody’s fault, with no one to blame. Did you know that just the ride in an ambulance costs up to $1,400? The last bill my family received from the hospital following my medical treatments was $2.1 million.
Meeting with my college counselor at my high school this past year, we began talking about a possible class that I could take my senior year, Passion Project. This is a class based solely on individual achievement and interest, with each student in the class doing a project on something different. My project is a blog and support page with multiple of my own articles posted on my own experiences with the hospital, my diagnosis, my illness, and the time I’ve spent since then adapting to my new life. I want this to help other people feel seen and understood when it comes to the magnitude of how severely medical treatment can impact someone. My Passion Project is the activity I participate in that continues to make me come alive. To write about my own experiences, which are some of my most vulnerable moments, and know that I’m helping others with my words is a feeling I can’t describe. All I want to do with my life is help others. To know I can do that by simply writing about my unfortunate circumstances and letting other past patients know that they are seen and heard is something for which I will forever be grateful.
Although many things have happened to me that I can’t control, I fully believe that I can control how I react to them. I can turn my pain and struggle into a catalyst for making an impact on my life and those around me. I can turn my cancer journey into something that empowers me and others. I am currently working on a website that will provide resources, support, and comfort to those who have overcome health issues and are struggling to adapt to their new normal. My blog will connect those going through chronic illness, specifically young people, to those of us who have been through the struggle and have come out on the other side. I spent so much time alone, left to my own thoughts and experiences during my treatments. I have been through some extreme lows. I never want anyone else to feel as alone as I did in that hospital and on that journey.
I like to think of myself as someone who cares for others and is strong. However, going through this journey changed the way I look at life and the path that I will take. I have become more outspoken and assertive and realized that life is not only too short, but it is too valuable to not do the things you want and speak what’s on your mind. I have reevaluated my views on so many things including religion, my relationships, and my path in life. I know how strong I am and can be. I am truly bad to the bone, and it has nothing to do with cancer.