I was about to start high school when my dad was diagnosed with a grade three brain tumor. Even at that age, I did not fully understand the severity of his cancer or what the next steps entailed. Luckily—with one of the best brain surgeons from Duke Medical Center and the right treatment—my dad survived and has never relapsed. Life completely changed for him at the age of 50, and he was never able to return back to work, but we thank God every day for His miracle.
As I started high school, I noticed there was a football game held every September for Pediatric Cancer Awareness Month honoring a student I never had the chance to meet. Matt Hobby passed away from Ewing’s Sarcoma at the age of 18. Ewing’s Sarcoma is found mainly in the bones or tissue of children—which can’t always be operated on.
I remember feeling confused about how doctors were able to save my dad’s life but not Matt’s.
Facing this fact at a young age showed me how each cancer and every person is unique. My dad might have survived through chemotherapy and radiation, but he was fully-grown and had a strong immune system. The fact that no new drugs have been developed for children’s cancer in the last 30 years made my stomach churn.
These kids need treatments specifically designed for their smaller bodies. Only 4% of government funding is dedicated toward childhood cancer research, with the other 96% percent only funding research for adult cancers.
I knew I wanted to make a difference for the better.
Growing up, we see pink ribbons for breast cancer awareness everywhere we go, and simple awareness can go a long way. As a freshman coming into the University of Georgia, I decided to start the first Rally Foundation non-profit college chapter to start spreading cancer awareness to a younger generation—normally childhood cancer does not attract advocates until it directly affects someone’s child. Many parents thanked our club for putting their children first; they know that it’s hard for college students to picture themselves in their shoes.
I am very grateful for the opportunity to make a difference in these parents’ lives and happy that my club will be continuing next year, even when I am no longer a student. My club members are passionate about this cause, and I hope more colleges will be inspired to start their own chapters.
Now, as I walk away from my four years and countless hours of maintaining the club at UGA, I know that these kids will always be my top priority. Advocating for this cause has changed my outlook on life itself.
I have always talked about why I fight for these children, but I never told anyone how these kids are the ones changing MY life.
I had a major surgery in college that gave me a reality check about my health. I remember feeling depressed during the recovery, but then I thought about the kids beating cancer. They are technically “in recovery” their whole lives due to side effects from their harsh treatments. If they can handle it, so can I.
Just when I thought I could live a normal life again, last year I woke up with an excruciating pain in my arm. I couldn’t use it for a month, and the pain soon spread to my neck. Doctors found in my MRI that I have Type One Chiari Malformation, which is unfamiliar to many people because of a lack of awareness.
To put Chiari in my own words, my brain is too big for my skull and my cerebellum is pushing on my spinal cord. Thankfully, Type One means I have enough space right now where my spinal fluid can still flow freely and I will not need brain surgery. Neck pain, headaches, weakness/numbness of muscles, and balance problems are the main symptoms I live with.
I am in the process of changing my life around to live more comfortably and continue to monitor my Chiari. I have endured months of physical therapy and spend more hours in doctors’ offices than people twice my age. Daily activities like driving, sitting, sleeping, and typing this article bring me horrible pain. But even though I physically cannot give these kids my signature piggy-back ride anymore, I will always think of them.
Any kind of head injury worsens my Chiari. For the people who don’t know me, I am a very high energy—and often clumsy—person. However, I hate living life in fear. I hate being terrified to ride a bike or play sports. I thrive for adventure, but anything that puts my body at risk is a big “no no.”
In the past, I have thought “why me?” I hated being jealous and comparing my life to others. I learned to turn away from those negative thoughts because that was not the way God wanted me to handle my pain.
I thank God for using my pain to help me become a stronger person. I thank Him for showing me how to use my passion to help others. The quote I live by and will continue to as I monitor my Chiari is: “Use your pain to work purpose in your life.”
Without having fought for these kids, I know I would not have the positive approach to live life that I do now. It is so important to always be thankful, no matter how bad my situation may seem. I enjoyed a normal childhood and so many kids cannot even say that. These “superheroes” fight hard, never give up, and of course change the world.
