“I was 8 years old when I started having seizures and was diagnosed with a benign brain tumor. I am 20-years brain tumor-free. And next month, August 2020, should be my last ever MRI and I’ll get the all-clear.
I don’t remember exactly when my seizures started happening, but I remember having them in during class around my teacher and classmates. No one ever said anything to me about it and I honestly thought I was fine and that I would grow out of it. It just suddenly started happening one day. I would get this tingly feeling on my left side, reminded me of the feeling of when your foot falls asleep and then I would start to shift to the left side. I couldn’t control it. Sometimes it would only be a couple of times and sometimes it would happen a lot. I had to jump off my bike one time as a kid because I felt it coming. I would hide in the bathroom in the field next to my parents’ house because I didn’t want anyone to see me.
One night, I had a really bad seizure and the ambulance had to be called to my house. My sister woke up and saw me having one. It lasted for a minute, which is a long time when they may only last for 20 seconds normally. My sister woke my parents up and they called the ambulance. This is when they found out I was having seizures. When they called the ambulance, they thought I was an 80-year-old, not an 8-year-old. I ended up being just fine and just had to go to the hospital the next day for a CAT scan. That’s when I was diagnosed with a brain tumor.
I remember my parents sitting me down and telling me I was going to need to have surgery. I was so scared, and I cried and cried. Then I remember feeling like, ‘Wait, this is going to help me, and I won’t have these seizures anymore.’ I had sort of a sense of calmness. My first brain surgery was scheduled for June 2, 2000. This was supposed to be my one and only. Get in, get the tumor, get out. That, unfortunately, was not the case for me. I remember that morning seeing a fellow neighbor checking in with their child, and then me having to change into a gown and then waiting in a different room with my parents, grandma, and our pastor. The nurses came and got me, and I didn’t want to go. I cried and cried. I mean, for an 8-year-old, this was pretty scary. It’s even scary for me, at 28, thinking about it and what I went through. I went back sat on the surgery table. They calmed me down and when I laid down, I didn’t know what was next. The nurse put the mask on me and it smelled horrible. I can still smell it to this day. Immediately, I was upset and flailing, and I remember kicking someone by accident and then I woke up in the recovery room.
This was when my doctor and parents had to tell me, after being under for 8 hours, they could not retrieve the brain tumor. When they went to remove it, somehow it shrunk. Because it was so tiny, they didn’t want to risk injuring me elsewhere. My brain tumor was the size of a pinky nail. I was devastated. I was in an excruciating amount of pain and now I had to heal and then go through this again. But I was prepared for round two. I was only in the hospital for a couple of days before I went home.
My second brain surgery was on June 23, 2000. It was only 4 hours, thankfully, and this time, I woke up as they were moving me from the surgery table to the gurney and rolling me out. I saw my parents and my aunt. I was so groggy, but I do remember seeing their faces. It was a nice thing to see, thinking ‘Okay, all is good.’ Both times I had fall-out stitches, which I was so lucky to have. They were gross though when they found eventually fall out, but it’s pretty nifty something exists like that. My scar started as an L and then now it is a C. I joke and say, ‘It’s the Grand Canyon on my head’ because of the big divots I now have now. You can’t see my scar, but a hairdresser can when they cut my hair. If I see someone new, I always kind of warn them, ‘Hey my head is fine. I just had surgery when I was 8.’ I wish I could see it. I always wondered what it looks like if I were to shave my head. They never had to, thankfully. Sometimes when people have brain surgery, they have to have their heads shaved.
I was on medicine for a short while for my seizures, but I haven’t been on any since then. Recovery was pretty smooth the second time around. I just couldn’t go swimming and get my head wet that summer. I had to be really careful of my head. All through middle school and high school, I couldn’t do certain activities in gym class. I never learned how to dive off a diving board or dock. Still don’t know how to at 28 and that’s okay. My husband tried to teach me, but I honestly was too scared because of my head.
I couldn’t do some sports. I always wanted to play soccer. I cheered in high school, played tennis, and was in color guard in the marching band. I graduated high school, went to college, and got an associate’s degree in hospitality management. I work full-time now for a renewable construction company. I have a wine blog on the side, and I am married, and we have the best yellow lab named Brooke.
Life has been fairly normal. I never had any struggles in school with learning. I just go for an MRI every 4 years. They can’t even tell where my brain tumor is anymore because of how well everything healed up. I am thankful and grateful for the doctors, nurses, and staff and Children’s Hospital here in Buffalo, New York, which is now John R Oishei Children’s Hospital. The new hospital is beautiful, and I get to close out my journey next month in the new place with the same neurologist I had 20 years ago who saved my life. If my tumor was never removed, it would have grown and I would have been paralyzed on my left side and eventually, I would have not been here.
My heart is forever filled with gratitude. I know things could have been worse for me and I am lucky.
The hope is to start giving back. I want to start a GoFundMe page to get donations to give to the hospital, as well as making blankets for kids having surgery. I want to give back to the place that helped me and I hope to brighten a child’s day because it’s a scary situation to be in when you are going through something like that.”
This story was submitted to Love What Matters by Kimberly Schwarting from Buffalo, NY. You can follow her journey on Instagram, their blog, and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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