At the age of 9 in 2016, I went from being an active, athletic student to suffering from daily headaches of unknown cause. These headaches often became debilitating and were accompanied by other side effects such as a loss of appetite, trouble sleeping, and snoring. Although these symptoms were thought to be allergy or asthma-related at the beginning of my journey, it was later suspected by an ENT that the pains I was undergoing were sinus related, so I had an adenoidectomy that proved to be of little assistance. In an attempt to reach the proper diagnosis, I had my first MRI in April 2017 which revealed a developed mass near my clivus. With the use of another set of scans and eventually a biopsy, the size and precise location of the mass were determined and it was revealed that I had a chordoma.
The first official operation I underwent was a craniotomy on June 12th, 2017 in which my doctors were able to take out a majority of the tumor, however, they quickly realized another surgery would be necessary. My next operation took place in the following October, during which they went through my throat to retrieve the remaining part of the tumor and were fairly successful. In order to limit the chances of the tumor metastasizing, I underwent 9 weeks and a total of 42 doses of proton therapy. I completed radiation by February 2nd, 2018, and it successfully killed off any existing cancer cells.
I am now 16 years old and have been healthy ever since my radiation treatment. I am currently a sophomore in High School and have been able to return to my normal life completely with a new sense of pride and gratitude. In school, I strive to challenge myself as a student and attempt to excel in all academic areas. Outside of school, I work as a tutor for students aged 2-10 and I participate in several of my school's clubs (one in which I am a leader). In my free time, I enjoy spending time with my friends and family. Whether it is going out to eat or going to the mall to shop, I find it so rewarding to enjoy the little things now that I am healthy and can prioritize doing what makes me happy. Although my journey with chordoma was extensive and a tough one at best, I am now able to make the most out of what life has to offer me and use my own story to inspire and guide others.
Throughout my chordoma journey, my parents have proved to be the most helpful to me in my time of need. Although finding the correct diagnosis and treatment was an extensive and difficult process, my parents never gave up on trying to find a solution for the pain I was in and they would stop at nothing to make me better which I will always appreciate. Being that I was so young for the duration of my journey, my parents worked extensively to make sure that I was never worried about my own health and that I was thoroughly prepared for everything that I was going to experience which was truly remarkable. Along with my parents, my entire family was so good to me during my journey and made sure that I always felt loved and supported. I remember my grandparents, aunts, and uncles constantly checking up on me and my parents to make sure that we were doing okay and always making sure to help out when they could. I also could not have gone through my journey without my friends who always made me feel better when I was struggling and who made sure I had something fun to do especially after surgeries and treatment. The amount of love I felt throughout my entire journey was undeniable and will always be a pivotal part of my recovery!
Throughout my experience with chordoma, I have learned so many important things that I still carry with me to this day. Although I was relatively young during my fight, I quickly picked up on the importance of having a strong support group around me during my journey and constantly surrounding myself with positive individuals who encouraged me to never give up. The amount of joy and happiness people were able to bring me even at such a difficult juncture in my life is indescribable and inspired me to push through. Although my fight with chordoma was in no way easy, it is important for patients to understand that it will get better as long as they are willing to commit themselves to their fight and remain strong and resilient even in the toughest of situations. Some ways I kept myself hopeful throughout my fight and during hospital stays included coloring books, puzzles, movies, and books which always seemed to take my mind off of what was going on around me when I would become overwhelmed. Another helpful strategy would be to talk to a trusted adult about any questions or concerns you may have especially when newly diagnosed because sometimes it can help to simply talk out loud and receive answers to any unknowns. For me personally, I always knew that I could rely on my parents to have a conversation and calm me down when I was confused, which was crucial to my mental state during my journey.
The Chordoma Foundation was an important resource for my parents when they learned of my diagnosis. The Patient Navigators were instrumental in providing answers to the questions my parents had regarding the options for my treatment and recovery. They were also very helpful in providing introductions to other families that were in a similar situation. My family continues to be involved with the Chordoma Foundation and we hope to find ways to further support other patients and the mission to find a long-term cure.