Never Fear Fate

Never Fear Fate

Alyson

Just shy of 16 years old, a junior in high school. I had it all going for me…my friends, my grades, my extra curricular activities, even my future…& I never thought a game of hide & seek could change that, but it did…QUICK.

OCTOBER 2010– A normal Friday at school, we had a volleyball game & a church “back to school” lock-in that night, I couldn’t wait…games, food, friends, fun & more food. Just before midnight we were gathered in the fellowship hall, we had just got done shooting each other with paintball guns (Pastor regretted that decision), we were goofing off doing cartwheels & back flips while waiting for the next game, SURVIVOR- my favorite.

In reality Survivor was just hide & seek with a twist…all the lights are turned off, no lights allowed- period. Walking/running wasn’t allowed, only crawling…or at least that’s how it’s suppose to be. You’ve got a guard to protect the safety zone, a team of three who are “it”, & the rest of us are free. This game usually lasted hours…after about four rounds of being the one to capture I was finally free. I knew exactly where to hide, it worked every time. So I laid there still under the pew, barely even allowing myself to even breathe (I was a champ at this game, I never got caught), I let the time pass…I was only feet away from the ‘safety zone’. I finally decided it was safe to make a move, I made it within inches of doorway I needed to pass through & what do ya know?

Somebody didn’t listen to the “crawling only” rule… I took a knee to the head, I blacked out & by the time I regained consciousness the lights were still off but I could feel the room spinning & someone saying “I think she got hurt.” They turned on the lights & I was literally kneeling in a puddle of my own blood. After about two and a half hours of my nose continuously bleeding we thought an ER trip for my broken nose might be necessary (we weren’t gunna waste a trip on a concussion we for sure knew I had). So, after sitting at the hospital for what felt like days it was confirmed that my nose wasn’t broken, I wasn’t to participate in any athletic activities for at least 2 weeks due to having what they thought was a small internal bleed that would stop on its own… Those two weeks dragged on & on…finally that Monday was here, I had never been so excited to get to run a slow mile, that was until I got checked over by our school’s athletic trainer…turns out with a concussion like mine you have to have a neurologist do a physical evaluation to be released.

DECEMBER 2010– My neurologist had a two & a half month waiting list, I was out of all athletic activities for that long even knowing I was perfectly fine– so I thought. DECEMBER 29, 2010– Sitting in the waiting room, it felt no different than any other appointment I had ever been too…I mean, why should it? I was anxious to get in, get my release note & leave… After meeting the doctor & reviewing my scans from October she agreed to let me start sports again, under one condition…I had to get a new MRI scan done just to check things over– I thought, “no big deal, everything’s fine, & now that I’ve lost half my junior year, I get to start preparing for my senior year in athletics.”

DECEMBER 30, 2010– The morning of my MRI scan, fun stuff right there. The scan was the easy part of that day, it was the phone call we got that afternoon that threw us off. It was the doctors office, she wanted me back in her office IMMEDIATELY. That left us with the weekend for our minds to wander, we knew it wasn’t good…

JANUARY 3, 2011– 9:00 AM- appointment time. We were called back & sat in the exam room for now more than 5 minutes before the doctor made her way in– that was abnormal, doctors always make their patients wait… The first clip of new we got devastated us, we thought it couldn’t get worse– that “small internal bleed” that was seen the night of the original CT scan was no bleed at all, it was a tumor. She quickly went on to tell us that that tumor wasn’t the bad new at all, but that the scan goes further down & she found a second tumor. Both of my parents were at the appointment with me, we all just sat there in disbelief. I was fine 10 minutes ago & now you’re telling me I have two brain tumors? I’m 16, that can’t be right. She went on the refer me to see a neurosurgeon in a bigger city.

JANUARY 10, 2011– It took no time at all for us to get in to see the surgeon. This was scary, it was all happening so fast. We didn’t know what was going to happen or my course of treatment, or anything really. He does a physical & checks me over thoroughly, he does all sorts of tests & goes over my MRI scans with us. He had no answers, no idea where they came from, what they were…anything. He ordered for a repeat scan to be done in two months & a follow up with him. He told us that only the second tumor that was found was really to be worried about, he told us the one thing that the neurologist didn’t, & that was the location– right in the middle of my brain stem. Six months went by, three new scans & three follow ups later, school was just about over for the year & he left it up to me to have the harmless tumor taken out or not.

JUNE 2011– I decided that even if it was just the harmless one that having one less tumor would feel better on my shoulders, so I had the surgery. Surgery went smooth & I bounced back in less than two weeks– My surgeon told me we could put “dangerous” tumor on the back burner for a while, we could space out scans & check ups to every six months & that I could go about my senior year like any other student in my class– so I did.

SEPTEMBER 13, 2012– A normal check up (or what we thought would be normal) was on the agenda for the day… The MRI was done & over quick– with & without contrast, we went on the see my surgeon. He does my physical evaluations, goes over my scans, focusing on the spot where my “dangerous” tumor still is & where my harmless tumor once was– he was just about ready to dismiss the appointment when he picked up the radiology report to confirm what he just told us & when he did that, I can still hear it like it was yesterday, he said, “…the radiologist reports says they spotted anot–.” He just stopped, I think even he was shocked, but I knew the ending of the sentence…I fought to hold back the tears but it just wasn’t happening… I had a third tumor- in a new location…in my ear canal. He referred me to an otolaryngologist at the same hospital, I saw him the next week– he reviewed my scans & scheduled for me to have genetic testing & hearing tests done. He wanted to see me back in three months to see if the tumor had progressed, do a repeat hearing test & to get my genetic test results.

MARCH 2013– It was time for my second follow up- nothing had progressed, that was good. But he proposed I have the tumor removed to preserve my hearing…so it was scheduled, the next time I would see him was in the OR.

APRIL 22, 2013– It was the day of surgery, not a single cell in my body had any sense of worry– I had no doubts that I’d bounce back from the surgery just like I did the first on–boy was I WRONG. We agreed to the surgery to preserve my hearing, statistics showed I only had a 4% chance if losing any hearing at all– something went wrong, my blood supply was cut, I woke up completely deaf in one ear– that kicked off an extremely emotional recovery. I didn’t bounce back at all. I couldn’t eat due to my jaw muscle being cut in surgery (part of procedure, not a mishap), all the different medication I was on made me sick anyway so I didn’t wanna eat, I could stand for more than 30 seconds, my equilibrium was off (to this day it remains off), etc. the list goes on & on, it was a long hard road of recovery this time around.

May21, 2014 (today)– Over a year later (after many follow ups with both surgeons in between)- I still live with the tumor in my brain stem, that one night of playing hide & seek completely threw my life of track. I had my future set & now I have no idea where I’m going. 19 years old– I’ve been through two brain surgeries, I’ve got my own medical team, I’m half deaf (I can’t walk straight half the time because of it), I get migraines EVERYDAY, & I may have a recurring tumor in my left ear…the list goes on. Now, I know people have it worse, way worse…but I also know that not a single person has fought my war for me, I know the strength it requires to take on things like this. I am who I am because of my worst experiences & though some days I wish I had never been diagnosed, I know I wouldn’t be the same girl I am today had I not…

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.