My name is Jessica and I’m sixteen years old. I was born on February 17; which for some reason always lands on School’s Mid-Winter Recess! So I always celebrate my birthday with my family only, because most of my friends forget. I’m a junior at Hillcrest High School in Jamaica, NY. I’m a pretty “normal” girl, if you really think about it; and I mean, really think about it. I’ve been through a lot, but who hasn’t, right? Trust me, I’ve been through more than any teenager should have to go through. And this is where my story begins.
When I was seven years old, I went to Mexico for the first time because my parents thought I should meet my grandparents; I spent most of the vacation with my dad’s parents and only spent a day with my mom’s. I had the time of my life; no parents, no curfews, no rules, who wouldn’t right?!? Unfortunately the fun ended after I got into a car accident with my cousin and uncle. My cousin and uncle were fine, not a scratch on them. I wasn’t as lucky. The car was one of those old-fashion 2-doored car and the seatbelts didn’t work. I wasn’t wearing my belt and ended up smashing my face onto the dashboard; I broke my nose and I was bleeding a bit.
I acted like nothing happened, returned home in cozy little Jackson Heights, NY (which still is and always will be my home), and continued with my normal routines. Pretty soon my mom started noticing that I’d snore a lot at night (which I never did before) and that I’d wake up gasping for air (as if I had just had an asthma attack). I’d always ignored her when she’d tell me that I did that because I’d never remember it, but then I started having dizzy spells and headaches that would come and go.
For next two years my mother would constantly take me to the doctor’s office and tell them that something was wrong with me; and my mom would always get the same answer, “It’s just some congestion, here’s a prescription.” In 2003, my doctor was out sick so another doctor examined me. Imagine our shock when he said, “Your daughter has a deviated septum, hasn’t anyone told you?” He ordered a cat scan. We went to yet another hospital and they did the cat scan. We waited anxiously for about a week for the result. Deep down we knew that a broken nose wasn’t causing my asthma attacks, dizzy spells, and headaches. The headaches were so bad that I’d spend most of my time at the nurses’ office in school and I’d carry a bottle of adult Motrin pills with me everywhere I’d go. Sometimes the pills didn’t work; I’d have to take a shower and a nap.
Anyways, the result finally came in and my mother was imagining the worst, while I tried my best to act as if nothing was wrong. Deep down I thought that nothing could happen to me because I was a good, hardworking girl. The doctor finally saw us and he sat me down, examined my nose, and mumured under his breathe. I’ll never forget his words, “The cat scan has revealed an unknown mass between the skull base and her nose; it’s possible that it’s a clival chordoma but I want to do a biopsy just to make sure.” My mom questioned him while I just stared into space; I had no idea what it meant to have an ‘unknown mass’. I acted as if nothing happened, as if none of it worried or scared me. But it did, it terrified me to know that I could have cancer at such a young age. How could something like this happen to me?
I began eating more out of fear and missing school because of all the doctor appointments I had. I’ve had over 20 cat scans and MRI’s in my entire life so far and there’s still more to come. After the biopsy was done, our fears were confirmed; it was a tumor, a benign tumor that was in a very bad place and that could return even after it was removed. The tumor was about the size of an egg, and it was growing. As it grew, it covered my nasal airways and it put pressure on my brain.
In 2005, the doctors finally put a date to when they were going to remove the tumor; September 8th, 2005, was the first day of school and the first surgery. I was more worried about missing school than I was about the surgery. My doctors told me that they’d try to remove it through my nose, because they didn’t think it necessary to cut my head open. I was wheeled into the OR’s waiting room, accompanied my mother when it hit me that if anything went wrong, I’d never see her again. I couldn’t stop shaking. As I was wheeled into the actual operating room, I got even more nervous and I finally broke down. I started crying as the nurse injected the anesthesia into my IV. Another nurse placed a mask on my face and told me to count to ten. I only got to number three when everything began to spin and then it all went black.
When I woke up, I felt like I had been punched in the face. I was still half asleep and all I wanted to do was sleep. My mom and dad were both by my bed and were waiting for me to wake up. My parents are seperated; my dad lives in Kentucky, while my mom lives with me in New York. It made me happy to see that my dad had drove overnight in order to be with me. I waited for the doctors in the PICU (Pediatrics Intensive Care Unit) with my mom, who spent every single night by my bed, and dad, who slept in the waiting room that was next door (there was no room in the PICU, so only one of them could stay; and my dad couldn’t stand the noise my EKG machine did). The doctors said that they had only removed 60% of the tumor but that it was not enough. They had placed a lumbar drain because they had “broken” a small “veil” that seperates my nasal airway and the liquid that surrounds my brain. They had managed to fix it by giving me a “mini-liposuction”. I had the lumbar drain removed and placed another three times, without any anesthesia or numbing medication. Once it was permanantly removed, I began my physical therapy, because I couldn’t walk for having spent so much time in bed. I stayed in the hospital for a month and a half. My friends and my teachers never knew about my “condition” but there was no hiding it anymore. I had to return to school and I told my closest friends, who at the time were Dylan and Isaiah. I’d continue to miss school because of my appointments, but I knew that I had the support of my mom, my dad, my family, friends and teachers; I knew that I was not alone. I continued my normal routines, and put even more hard work into my studies.
On December 13th, 2005, I was staying at the hospital again. This time the doctors told me that they had to shave my hair and “cut” in order to remove the remaining 40%. They told me all the risks and I acted as if none of it bothered me. I went through the same pre-op process as before; nurses placed an IV, drew blood, and checked on me every now and then. That night I sent my mother out to buy me some McDonald’s; she also bought some cheesecake and a veal sandwich. I remember my last meal perfectly. The next morning I was wheeled into the OR’s waiting room once again and my mother was by my side the whole time. I couldn’t stop shaking. As I layed in my bed, I stared at the white light that was in the OR. As a nurse injected the anesthesia, I cried once again because the risks were higher. When I first woke up, I tried so hard to open my eyes, to speak up, but I couldn’t. I still had the breathing tube in. I was gagging, crying and wanting to pull it out but my mom and another nurse told me I couldn’t. I pretty much blacked out after that. My head and face were swollen and wrapped up. The doctors thought I couldn’t speak because I had had the breathing tube in for so long. The surgery had lasted about 13 hours. If I wanted something, I had to write on a pad what I wanted. The breathing tube was out and I was hungry, so the nurse brought me food. I began to swallow when all of a sudden I started choking and threw up.
Doctors came and told me that they had damaged my vocal chords and my throat when they removed the tumor; they had also hit my cerebellum, which is why I ended up cross eyed, and couldn’t walk. They expected me to return to normal in a couple of days, until then they had a temporary feeding tube placed (which was like a long straw that entered through my mouth all the way down my esophagus and into my stomach). I was “fed” Ensure milk with some water. I couldn’t stop gagging and I had to try to talk out of the side of my mouth. I cried so much because I thought that this was the worst thing that could ever happen to me; I spent most of those days sleeping, while my parents tried to console me. I’ve always had a very good sense of smell (especially when it came to food), so my parents had to eat in the hospital’s cafeteria (just to avoid making me have another breakdown). During my stay, my friends called me hundreds of times to see how I was and I never answered their calls; I couldn’t let them see me like this, I didn’t want their pity. I talked to a couple of therapists and slowly I began doing my physical therapies so that I could walk again; unfortunately I was tied to the bed by the feeding tube, so I couldn’t go far.
On December 27th, 2005, I was scheduled for yet another surgery. This time, doctors were going to place a more permanent feeding tube (G-tube). They removed the “straw” feeding tube and let me “practice” eating, but I still couldn’t. The new feeding tube was the size of a pen’s cap and it was placed on my stomach so that whatever I was fed, went directly into it. At first it would hurt; I had an open hole on my tummy, how could it not hurt, right? My mother had to feed me because I couldn’t touch it, let alone look at it. But after a while, I got used to it; I fed myself and even cleaned it (so as to not get an infection). Once I had the G-tube placed and talked to more therapists, I seemed a bit happier. I slowly began to walk or rather limp across the room. My sense of humor even returned. I remember that I’d limp/chase my dad and the nurses around in the PICU. I’d watch my favorite seasons of Friends on my portable DVD player that my uncle had given me for Christmas. I began doing some simple swallow excercises to try and restore my ability to swallow. Shortly afterwards, my dad had to leave. I cried as he said good-bye. I didn’t want him to leave. Not again. But my mother calmed me down and assured me that I’d see him again, which I did.
Pretty soon I was moved out of the PICU and placed at a permanant rehab center. When I first arrived at St. Mary’s, I was sharing my room with three girls and my mom. Two of the girls were there because they were diabetic and a bit hyper-active. The other girl, whose name was also Jessica, reminded me a lot of myself when I had just gotten out of surgery. All Jessica did was cry and yell that she didn’t want to live anymore. It was like looking in a mirror. I only talked to her once over dinner with my mom. They were eating one of my favorite, arroz moro with pernil, a classic spanish dish. She had gotten into a car accident and had been staying there for a couple of months now. She left shortly after our talk. Another girl was moving in. Her name was Geraldy and she was accompanied by her mom, Yudelka. Geraldy had gotten into a car accident while out grabbing a bite to eat. She was the opposite of me. She was happy and she could eat but she couldn’t talk. She had suffered some brain damage. When I was feeling down (which was pretty much all the time), Geraldy would come to my bed and pull me up. She’d make me laugh and we’d play around. Our moms even got along. They had become shopping buddies. Geraldy and I became such good friends that we hated leaving for our therapies because we weren’t gonna be together. I continued “practicing” and continued my therapies. My eyes were a bit less crossed and my voice had returned to normal. I was walking pretty good and I was going to school at the rehab center with Geraldy. I was my old self again. I started having visitors; each of ‘em commented that I looked okay and that I had lost lots of wieght (I was on a strictly Boost milk only diet and I weighed 104.) Contrary to what they said I wasn’t okay. I wanted to eat; I wanted to get rid of the G-tube and the stupid cup that I was forced to carry around, because I couldn’t swallow my own saliva.
In February 2007, I left the rehab center and went home for the first time in what felt like ages! I was so happy that I was home. I missed my room, my bed, everyone, and everything. But then the doctors said I had to have radiation therapy, therapy that was only in Boston, Mass. I hated the fact that I had to leave yet again, but I did so anyways. Proton therapy wasn’t as bad as I thought, the doctors were really fun. Dr. Liebsch was my main doctor; he was really nice and explained everything thoroughly to us. While I was there, I received even more therapy for my swallowing condition. Dr. Hartnick and Dr. Ashland gave me a series of botox injections that were supposed to relax my vocal chords and restore movement. Nothing worked. Dr. Ashland then started me on swallow excercises that involved ice and a long, “dentist-like” mirror. I remember that every Friday over at Proton Therapy, the nurses and doctors would set up a bunch of toys for all the young kids who were recieving radiation, or worse, chemotherapy. I met lots of people; most were worse than me. All that time I had been focusing on how bad I was and there were people who were worse. I met people who had terminal cases, for they had discovered tumors, cancer, or leukemia too late; some were old, some were young. Most if not all of them had travelled a great distance in order to find some hope. Some left without ever finding it. One of our next door nieghbors in Boston was one of them. One night she came home crying and my mom asked her what was wrong. She said that it was too late for her; her cancer had spread too much already and chemo wasn’t working. As my mom consoled her, I stayed in my room and thought about just how lucky I was. All this time I thought what had had happened to me was the worst thing that could happen to anybody. I was so selfish; I never realized that some people were worse, they were dying. I started having therapy with my social worker, Evelyn Malkin, shortly after that. (Never have been good with therapy sessions, so I kept this quiet. I have a tendency of hiding my feelings.) She helped me a lot. I felt like she was a second mother to me.
During our stay in Boston, my mom and I spent most of our time at MGH (Mass General Hospital). I was always on the computer, studying, reading, or doing anything that would take my mind from my life and from others. My mother would go over to the library section and read up on different types of health problems and diseases; or she’d go and try to finish the 1000 piece puzzle that the library had. I helped her occasionally. By the time we left, we had already finished it. On Saturdays and Sundays, we’d take the train and bus and go to the mall. My mom would go nuts shopping. I’d get bored easily.
In August 2006, I returned home. I continued to ignore my friends and I was home schooled. I met the best teacher ever. Her name was Eilene Verwys. She was always talking about politics; she got me hooked on them, so I started cutting out newspaper articles about the ’08 election. Mrs. Verwys convinced me to return to school, and to attend my graduation dance. I went and I had the best night of my life with my friends. No one minded that I had to eat through a tube or that I carried a cup to spit my saliva into. They were great. I hung out with my best friends that summer, and we talked about our freshman year in HS. I was so excited because I thought, ‘If no one made fun at me at the dance, maybe high school would be the same.’ I looked “normal”. The only thing bothering me was that I had to carry around a cup, but my excitement made me care less. And you know what? Going to high school was the best decision I had ever made. I met some great teachers and friends. I confided a lot in one of my first and best English teacher, Mr Brian Panepinto. I’d spend some if not most of my time in his classroom (still do actually.) I discovered my passion for writing in that classroom, my passion to learn and teach. Right now we’re planning our trip to Rome, Paris, and London. He’s the funniest teacher I’ve ever had. I’m really thankful that I met him.
On December 8th, 2008, a miracle happened. It was a Saturday and my school was having a trip. I decided to go. I had so much fun and I was so happy. When I got home, I started my “practice” sessions while watching tv. I had gulped down half a Snapple bottle when I realized that I wasn’t choking anymore. I called my mom, who told me to continue practicing. By the time she came home, I had already drank 2 cans of Sprite and a bottle of Snapple iced tea. We were literally jumping with joy. That same night, my mom, her cousin, and her cousin’s husband ordered some mexican take-out. My mom asked me if I wanted anything. I ordered my favorite, una torta de milanesa (chicken sandwich, mexican style)! My first bite, I choked and threw up. My mom told me that I had to take tiny steps. I didn’t listen. I started watching tv and took a bite of the sandwich. I didn’t choke! I ran to tell my mom who was in the kitchen, eating with her cousin. She told me to continue practicing. I ate the whole sandwich and another can of soda. That night I kissed the stupid Boost milk good bye (I’ve had so much of it that I can’t even look at it anymore).
Everyone was so happy. I was eating again. I went back to school and my friends couldn’t believe it (for some it took a while to notice though). My doctors couldn’t either. They, who had gone to med school, gotten their degrees in medicine, were smarter than anyone, and had predicted that I would never eat again, were wrong. I proved them wrong! I still spent a couple of months with the G-tube while doctors did tests to prove that I was back to normal; but I didn’t mind the G-tube anymore, because I was eating! All the tests did was prove that they were wrong from the start.
They removed the tube and wished me luck. I still continue to have dozens of appointments, most of which are checkups on the tumor. There’s still a risk of it returning. I was told that only 1 in 100 people have a case like mine. I was lucky. We found the tumor in time. Had I ignored it, I’d probably wouldn’t be here. But other than that, I’m just trying to get through life and trying to catch up on what I missed. Even though sometimes I wish I could go back and erase that part of my life, I wouldn’t. It wasn’t the best thing but had I not gone through it, then I wouldn’t know that it also wasn’t the worst. I met lots of great people and learned a lot from this expierience.
My life now? I’m concentrating a lot on my studies. I wanna be someone important in life, I wanna inspire. It doesn’t matter if it’s just one person or a hundred, what matters is that I follow my heart. Right now, my heart wants to get into a great college, get my graduate’s degree, and get a job as an English, Math, or Spanish teacher, or maybe as a writer/journalist. One thing that I learned from all of this? Through the hardest parts of our lives, we learn that we are never alone. I wasn’t. Another thing I learned? Everything happens for a reason; whether that reason be good or bad, that’s all up to you. Trust me.
As an ending to this story of mine, I’d like to say thanks to a couple of people. People without whom, I’d probably would not be here or be the person that I am today. First off, I’d like to thank my mom, for always being there and supporting me. She’s been through hell and back because of me, so you’ve got to admire her for her strength. Second of all, I’d like to thank my dad; he’s been there when I’ve needed him the most. To Geraldy, who as I last heard is getting better in speaking, thank you for dragging me out of bed and pulling me wherever you went. To all my doctors, nurses, surgeons, and therapists, thank you, without any of your help, I would not be here. To my family, for being supportive and keeping my spirits up high. To God, for showing me that life goes on no matter what. To my teachers and friends, for always treating me as if I was “normal” and never judging me. To everyone, thank you! God Bless!
