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Life with Gorlin Syndrome: Part two

Anja McBride

EDITOR’S NOTE: This is part two of a two-part series. Part one was published in the Feb. 13-14 weekend edition of The Mining Journal.

I sat anxiously in the waiting room before my first surgery, clutching my mom’s hand as my tiny legs swayed under the chair, my toes unable to touch the ground. My stomach became an even tighter knot when my name was called and a nurse led us through pre-op to our small section that was divided from the hallway with a curtain. The nurse took my vitals and I changed into a hospital gown and socks before playing Super Mario brothers as I waited for about a half an hour before my doctor came in. Miraculously, the doctor recognized my mom as his patient whom he had treated 14 years ago. “Lisa?” he called, and mom looked up and smiled when she saw Dr. Sean Edwards walk into the room. They chatted for a brief moment before he got down to business and explained the procedure.

Luckily, there has been huge improvements in what we know of Gorlin Syndrome since my mom’s surgery, and I would not be getting a denture or anything permanent. They would scrape out as much of the tumors as they could, and whatever they couldn’t scrape out would be drained over the next few months out of a small tube that would be stitched into the outside of my gums, with a small hole leading it down to the tumor. I would be on a soft food diet for two weeks, which I was ecstatic about because it meant I would be living off of things like popsicles, Jell-O, sherbet, ice cream, slushies, and mashed potatoes, practically an 8-year-olds dream.

A child life specialist also talked to us as I placed my seven or so stuffed animals neatly around my head as we were introduced to my surgical team. They showed me the anesthesia mask and I placed it over my nose and mouth to get a feel for it. My face instantly scrunched into a look of disgust at what smelled like grape Tylenol mixed with lots of hand sanitizer, not even an inch from my nose. Before I knew it, I said goodbye to mom as the nurses pushed me in my hospital bed down some hallways until we pushed through two large wooden doors and I saw for the first time the surgery hall of that wing.

Groups of chatting medical personnel lined the halls as they reviewed patient cases. We reached my operating room and the doors were pushed open and what I saw made my nerves twist my stomach even tighter. More of my surgery team was in the room, along with another, much less comfortable hospital bed where they would operate on me. A big light was in the back, shut off for the moment. Many other medical tools and machines that I couldn’t name were gathered in the room. They positioned my bed as closely to the operating table as possible and I scooted over, laying down on the much, much less comfortable surface. Instead of a pillow, a small, round, purple foam circle that was about an inch high was where I laid my head. Vibrating cuffs were placed around my ankles to keep my blood flowing while I was under anesthesia. Cold stickers were placed on my body to monitor my vitals and the kind surgical team introduced themselves. You know how in movies, when they are portraying a surgical scene, the camera looks up to see a bunch of heads in medical gear leaning over you so they are all you see? That is a spot-on representation.

When the team was done prepping me, the person leaning directly over my head placed the anesthesia mask over my nose and mouth and I immediately began to feel like I was floating. Voices became distorted and everything around me became harder to focus on as I slipped out of consciousness and everything went black.

What felt like just a few seconds to me was actually two hours before I woke up in post op, my face swollen and my mouth filled with many stitches and two tubes at the front. I felt the tender spot in my gums that still tasted like blood where they had removed one tooth. I was disappointed to see they had moved all my stuffed animals. The nurse tending to me saw that I was awake and said, “Hey, you’re all done and you did so good, how do you feel?” I tried to say, “A little sore,” but my mouth was so swollen and stitched up that I could barely move my lips, so while she understood what I was trying to say, it came out weird, which I was not expecting.

As the final effects of the anesthesia wore off, my mom entered the room and the nurse helped me sit up, turning on a movie as she handed me a slushy. I stared at my left hand which had an IV coming from it. I had never seen one before. The tube that ran from my vein to my IV pole was covered in a small plastic protective guard and lots and lots of very strong medical tape, the kind that hurts to pull off. A little while later, the nurse pushed me in my hospital bed down some hallways with my mom guiding my IV pole as we entered my hospital room that would be my home for the next several nights. I grinned when I saw the huge TV equipped with video games, movies, and musi

c. My surgical team left me a garland with my name on it, a glitter wand that said, “You make 5 West Mott a special place!” and all of my stuffed animals that they had dressed in tiny surgical gear. The tooth that they had taken out was in a small plastic cup with a metal lid. I thought it was so cool that they let me keep it to give to the tooth fairy that during my two-night hospital stay, I slept while clutching it in my hand. Two days later, I was discharged, my mom carried my bag of belongings as a valet wheeled me to the car. I hopped in and so began my trip home and my recovery journey.

Over the years total, I have ended up experiencing three ear surgeries, which are no longer a problem, and nine Gorlin related surgeries in the past eight years. Every year I go for a follow up with my oral surgeon, as well as other doctor appointments to check on the conditions I was born with as a preemie that don’t bother me but should be monitored every once in a while.

While it is a long and nerve-wracking battle that makes me yearn for my twenties so it will all be over, it has taught me so many things. It has made me stronger as a person and more appreciative for all that our medical workers on this earth do. It has made me appreciate each person’s unique struggles in life and taught me that you should always be kind, you never know what a person could be going through or has already gone through. It has taught me not to take for granted the small things in life, such as chewing food and hoping to someday have straighter teeth. I don’t know how many more challenges life will put in front of me, but I know that with strength and determination to push through, we can all get through anything if we stay strong and remember to always be grateful for the people we have in our lives, because nobody can get through anything alone.

EDITOR’S NOTE: Anja McBride is a sophomore this year and loves to read and play tennis.

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