My view on life has taken a much different route than most of my friends. Every morning was alike. I’d wake up with a headache, walk by the candle sitting on my dresser and get nauseated from the smell of it. I’d keep walking though, keep going and going; I never gave up. Sitting in my classroom in eighth grade Science, trying to put up with these headaches, was something I always dreaded. I was repeatedly told, by more than a few doctors, that I had a sinus infection that just “wasn’t going away,” and was prescribed more antibiotics after each course had ended. This occurred over and over. Finally entering my freshman year at high school, my mom and I realized none of this was the least bit normal. On January 1st, 2007, I didn’t know where I lived, or even who my own mom was. My mom, suddenly aware of my drastic conditions, immediately drove me to Stamford Hospital, where both my parents were told I was pregnant because of the test results caused by hormone imbalances. I personally don’t recall any of this because of the pressure in my head. My mom begged to differ, and forced the doctors to complete a cat-scan. Finally, after hours leading into the cat-scan, I was diagnosed with a mass on my brain and immediately rushed to Yale New Haven Hospital by ambulance.
As soon as we got to Yale, doctors explained to my mom that a stent, which is a drain, needed to be surgically placed through the skull to relieve pressure caused by fluid on my brain. My mom was told that without the stent, the excess fluid on my brain would have killed me. Fortunately, photographs are my only recollection of this experience. Later that month, after enough fluid had been relieved, a resection removed the tumor. The biopsy confirmed the tumor to be malignant. Afraid that she’d miss a doctor coming to discuss the results; my Mom sat right next to me and never left the room once. This exemplifies my mom’s endless devotion throughout the journey. My doctor confirmed that 99% of the golf ball sized tumor had successfully been removed. From my point of view this was really great news, considering so many childhood tumors either can’t be removed because of the location, or only a small percentage can be removed. On the other hand, the tumor had been lying against my Pituitary and Hypothalamus glands, which weren’t so great. Before I was sick, I was not at all familiar with the Pituitary or the Hypothalamus glands whatsoever. I later learned that they are the most important glands of the body. They produce many hormones that travel in the body, and stimulate other glands to produce many more types of hormones. Because of the immense pressure against the two glands; I now suffer Hypothyroidism and a complete hormonal imbalance. This causes a great deal of side effects including fatigue, lots of weight gain, weakness throughout the body, hot/cold intolerance, and more. Despite these difficult conditions, I refuse to give up. Even though my body and appearance has changed completely, I keep moving forward each day.
Shortly after my resection, the decision was made to surgically insert a port-o-cath, thus allowing chemo, blood transfusions and routine blood work easier on my body. I underwent four months of chemo at Yale New Haven Hospital. As a result of my counts being low, my taste buds changed every day, muscles on my entire left side were weakened, traumatic experiences no one should ever have to deal with. I had to stay away from all the people I love including my family and friends, just for the sake of not getting an infection, even a simple cold could be fatal to a cancer patient. I felt alienated, as if I were a stranger to those I love.
I could not have gotten through any of this without my mom by my side from day one. I believe her never-ending strength and spirit penetrated through me while I was sick. My mom taught me how to persevere through difficult times. She never gave up on me, and neither will I. My Child Life Specialists also really impacted my hospital experience in the most positive way. They always played Candyland and other games with me to try to keep my mind off “cancer”. I hadn’t realized it then, but these games were actually helping me regain my short term memory skills. My Child Life Specialists thoroughly explained every procedure that I underwent, by illustrating on dolls and diagrams. They guided me every step of the way, as I continuously asked… and still do, “why me?” They also supported my parents through every surgery I underwent. Many people do not realize how much cancer greatly affects the parents and siblings of an ill child. As a result of this experience, I am now determined to attend Wheelock College in Boston and become a Child Life Specialist. Because I have dealt with what ill children are going through “first hand,” I would like to “return the favor” that I received and help reduce their suffering by giving knowledgeable support to ill children and their families, and improve the wellbeing for all those who are affected by these debilitations and illnesses. I am the type of woman who sets a goal and meets it; I will never give up on what I set my mind to doing, and I believe that this is a huge strength, despite the adversity in my life.
Friends didn’t give up on us either. They organized a dinner schedule for my entire family. Families in Darien voluntarily offered to deliver a home cooked meal to us every night. Dinner was always at our doorstep at a given time every evening, with a kind note along with it. These gifts of kindness made a huge difference, coming home after hours of chemo to a home cooked meal waiting at your door. Complete strangers became friends during this time.
In times of need, the true colors of people and organizations shine through. My radiation therapy, to remove the 1% of the tumor remaining in my brain, took place at Massachusetts General Hospital, in the summer of 2007. My mom and I had been chosen to stay at Christopher’s Haven for the time of my treatment, which is an organization that provides housing for families of children undergoing cancer treatment. We were very lucky to be living in this apartment and we actually enjoyed walking all over Boston more than we had expected. The bond between my mother and me strongly developed. Even though I was living in Boston solely for cancer treatment I really appreciated its surroundings and everything Boston had to offer. Luckily for us, we didn’t even need a car because we walked to and from treatment, which was conveniently right across the street. My proton beam radiation was scheduled every day for 2 months. Having my music playing during treatment really helped me cope and relax through the lengthy procedure. After that, I usually had one hour of tutoring to keep me caught up in school. I never gave up my school work, or anything for that matter, while undergoing treatment. I achieved greatly despite the adversity throughout my illness.
All was going very well, and we finally heard the words we were waiting to hear, “100% cancer free...” On the other hand, the side of effects of chemo and all my medications continue. After radiation therapy, I noticed that I couldn’t hear that well in my left ear. Once I saw an ear doctor, I learned that I lost 50% of my hearing in my left ear and 10% in my right ear. This made it extremely difficult to keep up in classes, when I could barely make out what the teacher or my peers were saying. I now have to have words repeated over and over again in order to conceptualize them properly. I also slowly began gaining weight, continuing for almost two years. Months went by as doctors continuously tried to figure out what was going on. I was then diagnosed with the lowest thyroid levels ever seen, causing all the weight gain and fatigue. I did everything from seeing a nutritionist, to working out at the gym every day. Although I was told that no matter how much I worked out and ate healthily, I would still gain weight, I still do these for the benefit of my body. Nonetheless, I persevere. Shortly after treatment ended, I signed up for a gym membership at the YMCA. Being bald at the time, people would often whisper or stare. I remember when a kid pointed at me and said, “Look, she’s bald,” and this made me feel very insecure. About a month later, an elderly man came up to me at the YMCA and said, “You’re beautiful just the way you are; don’t let anybody tell you otherwise.” It was from that moment on that I realized everything really does happen for a reason; and even if the journey is horrible, people like this make all the difference. It was a real epiphany.
On the other hand, just because you’re cancer free doesn’t at all mean you’re done with the whole process. Because of cancer I’m currently more than double my size. And because of that I’m physically incapable to do crew, which I used to love, or hang out with my friends for more than a short period of time, let alone do a full day of school classes. Because of cancer, my life will always be completely different. I now have horrible stomach issues and headaches almost every day. As a result of all these problems, I started to get really far behind in eleventh grade due to all the doctor appointments and not feeling well enough to attend my classes. Thank God for the teachers who voluntarily stepped up to the plate to tutor me every day at home, helping me to successfully finish my junior year of high school. Again, it was all these little things that added up along the way, making the biggest difference in the world.
No one ever wants to hear the word “cancer.” The aftermath of it all is unexplainable. No one “gets it” unless they’re by your side 24/7, like my mom is and always will be. But I have to say, I’ve not only learned life’s greatest lessons, but I’ve also met unbelievable people throughout the journey. The friends I met during my illness actually know when I don’t feel well, because they’ve dealt with it all themselves. We have a bond that will never be broken. I, personally, will never know the reason why I got brain cancer in the first place, but I can’t change the past, all I can do is keep moving forward. Now that I’m looking at colleges, a different route has paved my career path. I am an aspiring student at Wheelock College in Boston, and want to study to become a Child Life Specialist, myself. I won’t ever give up.