For this particular Spotlight, we are going to do things a little bit differently. Normally, we ask a series of questions that are pretty standard, but since May is Brain Tumor Awareness month, a fellow SEGA Nerd wanted to share her story about the struggles of surviving a brain tumor. For Elizabeth, Sonic the Hedgehog helped her get through a very dark period in her life and regain the confidence that she lost while battling that brain tumor.
People often say, “That won’t happen to me!”, or “I never heard of that!, that’s fake or untrue!”, but people never expect the unexpected to happen to them; And that is what happened to me.
I grew up in the 1980’s as a normal little girl with a few health problems. It was never anything major like Leukemia or asthma, but it was obvious that I would get sick easily and more often than other kids. Because of the medications my pediatrician gave me, I was always skinny and smaller than other kids.
I didn’t understand why other kids didn’t like me, so I just spent my days playing by myself at school.
Kids often called me names and said I wasn’t a girl but that I was actually a boy, so I began to be called names like ugly and kids who would often say remarks like “eww” and publicly shame me so other kids would bully me too.
I tried to ignore it the best I could, but kids can be very cruel with their words. I would often cry even though I knew I could have ignored them, but for some reason I started to feel sick more and it affected my emotions sometimes.
At first I thought I was getting headaches and I would tell my nurse about it. She would let me lie down for a few minutes and send me back to class. I would be fine for a little bit, and all of a sudden the headache would come back. A small fever would follow as well as instances of nausea. I would go see the school nurse again who would say I had a sudden fever. I would be sent home early and by the evening I was perfectly fine.
This began to happen off and on for a while. Sometimes it would get worse, while other times it would get better, but every day was different. Sometimes I would trip in PE class or I would drop something, but I never thought anything of it. The kids would say I was clumsy or still say I was, “Eww” to me, but that was mostly it.
When I was 11 years old, the headaches began to happen more often. Fevers and stiff necks followed afterwards. I would tell my teacher, but the popular kid in school would interrupt and say I was faking. Their followers in the classroom would also say I was faking for attention.
Sometimes, the teacher would take the popular kids’ side and tell me to go sit down or go back to my seat. When class was over, I would not walk to my other class and went directly to the nurse instead. It seemed like the nurse was getting tired of me visiting her office . The school principal asked why I was being a troublemaker, but I wasn’t trying to be. I didn’t know what was wrong with me. I just knew my head would hurt a lot, my neck felt stiff, and I began to have problems walking.
I would tell my parents when I got home, but they already got calls from the school that I was creating trouble in class. At first my parents thought I was being trouble until they found out I was not going to school but staying at home without them knowing.
At first my parents were getting annoyed with these games, but when I couldn’t turn my head to face them, or answer them because I didn’t hear them, they got concerned.
At first my parents took me to see my pediatrician. He said I had migraine headaches, and prescribed me headache medicine. When my father would question my stiff neck, the pediatrician said it was related to the migraine headaches.
I would be sent back to school with the headache medicine, but the symptoms started to get worse for me. I began to get dizzy, and would throw up more often. Holding my head up was getting harder for me and again I would be sent home from school.
By this time I couldn’t walk by myself anymore. I would crawl around the floor of my house and crawl up the stairs to my room. I had difficulty keeping food down because I would just throw it up a few minutes later. My mother had to help me take a bath because I wasn’t able to stand up anymore to take a shower by myself.
My father finally found a family doctor who took me serious. He did a few simple tasks like asking me to walk or to hold something in my hand. When I couldn’t do either, he asked me a few questions. After he did his tests on me, he looked very concerned.
He wrote a note and told my parents to take me to the Memorial Herman hospital to get an MRI done. He told my parents what ever was wrong was internal. Even though he had no idea what it was, he knew the MRI would find it.
When I arrived at the hospital, they were very friendly to me. They gave me a nice tour of the hospital before bringing me into the MRI room.
I remember everyone’s face was so happy and smiling before they put me into the MRI machine and they even covered me in a blanket so I wouldn’t be cold.
But everybody’s face completely changed once they took me out of the machine; It looked like everybody had seen a ghost. That’s when I knew something must be wrong; The tone of everybody’s voice changed when they helped me out of the machine and back in to the wheelchair.
A while later, my parents arrive with the doctor, but something looked different. My parents eyes were red from crying and the doctor knelt down to me. I look up at my parents who did not say a word and I looked back at the doctor. The words nobody expects to hear are heard.
The doctor told me I had a brain tumor, but that he didn’t know if I would make it. He explained that the tumor was located just above my brain stem and that usually these tumors are not removable, especially when it’s this far long from erupting.
He said the tumor was about two weeks from spreading; If I wanted to do something it was my choice, so I asked what are my choices. He said I could have the surgery but chances of surviving were slim, and he said I could not have the surgery but my chances were not good. I would become a vegetable and eventually die. The doctor said there were chances I could die during surgery and no matter what, my chances of surviving were very slim due to the fact of how far along the tumor was and where it was located.
The doctor said it was my choice and not my parents or not his. I took a deep breath and said, “I will try to have the surgery.” He took note and left with my parents again.
A while later, they returned and took me to an ambulance. From there, the ambulance and took me to Texas Children’s Hospital in Houston, Texas.
So the next few days were spent getting more tests done, additional MRIs, and pumping my body with vitamins and steroids.
I spent almost a week just getting prepared for surgery and that alone was scary, especially for my parents.
Finally, my doctors introduce themselves again and my surgeon introduced himself to me. He said my surgery was scheduled for the next day in the morning, so I couldn’t eat anything after 10 PM. I was both excited and scared; My parents were excited and scared too because they didn’t know what would happen. The next day, the surgery went as scheduled and it was a success. My surgeon said they were able to get the entire tumor out. It was rare to remove such a tumor located in such a sensitive area of the brain, but they were able to remove it successfully!
The next few months were very difficult on me even though I survived my surgery. Twice I had to go back to the hospital due to fevers, and almost catching meningitis, because I had been taken out of the hospital too soon after surgery.
I also had to go back to school and complete the fifth grade or else I wouldn’t graduate. Everybody in school who bullied me treated me much different, including my principal. Of course I successfully graduated the 5th grade and spent my summer in therapy instead of summer school.
I had to take speech therapy, physical therapy, and occupational therapy; Everything I learned as a small kid and baby ,I had to learn all over again. It was often embarrassing because I had done most things by myself since I was a baby.
Having to learn it all over again at age 11 often made me feel depressed.
When I went back to school, I started Junior high school. I still was in recovery because my surgery had only happened a few months prior. My appearance was different from others: I had stuttering issues and difficulty making any friends. Like in elementary school, I was judged based on what the popular kids said about me.
I did trying to educate others about what was different about me and the kids often twisted everything I said to make fun of me instead. My brain tumor story ended up being a joke to many junior high school and high school kids; It was more of a time to make fun of me instead of understanding my weakness.
I was often made fun of in PE class because I had difficulty kicking or catching a ball, or doing other sports in class. I was often reminded of my brain tumor surgery and how I should have died instead.
It would often hurt me a lot because nobody cared to understand how difficult it was to even survive such a tumor. When people began to say go away, I would. I would skip school and stay home. Sometimes my parents would make me go to school and other times my parents would let me stay home. Most of the time, however, my parents made me go to school. Why? Because my doctors told my parents these things would happen but that I had to be stronger and just deal with it.
One day, I begged my parents if I could stay home with them. I cried and told my parents I didn’t want to be made fun of anymore, so they let me stay home with them. All I wanted to do was sleep in, but my parents said they had to go to the store. There was no way my parents would let me stay home by myself, especially after everything I went through that year, so I went to the store with them.
I really hated to feel so depressed. I should have been happy because I had survived something that many actually do not survive from, but being told by your peers that you should’ve died instead of surviving really hurt me. My new teachers in Jr High didn’t care either. Many thought I was just a chubby little girl, who shaved her hair for gangster reasons, or purposefully had an attitude to prove something; I was an easy target for others to attack.
Back in the 1990’s, brain tumors were not really heard of. I never heard of the name brain tumor. I heard of AIDS, cancer, and leukemia but never a brain tumor. When I began to get sick, my pediatrician never thought it was something more serious. It never even crossed my parents minds because they never heard of such a thing either.
By the time it was discovered what I had, it was almost too late; I almost lost my life. I was very lucky, but sadly many out there dealing with brain tumors are not so lucky. Sometimes they can only remove part of a tumor and it comes back, while other times they remove the tumor but another one comes back.
Unfortunately, sometimes they can’t remove it at all and the results vary.
This is why I share my story with others out there dealing with brain tumors. I also share my story so others out there who might be dealing with any of the following symptoms will consider getting checked out.
If you start experiencing headaches, don’t assume it is a brain tumor right away, it could be a migraine but if it includes the following please consider getting checked out. Blurred vision, loss of hearing, stiff necks, migraine style headaches, off and on fevers, emotional changes, vomiting, nausea and balance issues.
I did not expect it to be a brain tumor when I was a kid. I just wanted to be a kid and do what other kids did. I did not want to be in the hospital fighting for my life.
But now I want to be a positive voice for others out there dealing with brain tumor, please know if I can beat a brain tumor with two weeks to live then you can too. Always remain positive no matter what happens or what is said.
Do you want to know something positive that helped me with recovery after my surgery? My father knew I needed something to help me forget the troubles I was having in school with bullies and I also needed something to improve my hand-eye-coordination problems.
When my father saw I was enjoying playing the SEGA Genesis at the store, he bought it for me. The game that had caught my attention was Sonic the Hedgehog; It was the game that helped me improve my confidence as well as my hand-eye-coordination.
It was the best day ever when I survived my brain tumor surgery in March 1993 because I lived it and beat it, and I know others can too! I now share my story with others, help spread awareness, and help fight for a cure too!
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