After All, We Smile

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|This is the 97th story of Our Life Logs|


I was born in a small town outside of Portland, Oregon in 1999. My family and I lived with my maternal grandparents who were avid travelers. They would take us on trips, big and small, to let us experience new places. I loved my time with them.

Life was blissful and uncomplicated until I reached age three. I woke one day, and my cheek was swelling like a bruised balloon. I couldn’t open my mouth, and I had no idea what was happening. The swelling was too big to be written off as a rash, so my mom rushed me to the hospital where I was diagnosed with Ewing’s Sarcoma. It is a rare type of cancerous tumor that grows in your bones or the soft tissue around your bones. In my case, it was my cheek. Less than 5% of Ewing’s Sarcoma cases occur above the neck, so I was a very rare case. The cancer typically affects people within the 10 to 20 age range, which made the fact that I was only 3 even more shocking.

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At my fragile young age, I had to go through typical cancer treatments like chemotherapy and radiation. Some of my memories from this time are fuzzy, but I do remember many of my feelings. The most prevalent one was fear. I was afraid of dying, of the procedures, and of being stuck in the hospital the rest of my life. I didn’t want that, so I fought as much as I could to avoid that.

I lived in the hospital for two years as I endured my treatment. I surprised everyone by how happy I was in between treatments. I have some good recollections of my time in the hospital. They had a huge playground and kind nurses. Many of the nurses, both male and female, would let me paint their nails. My favorite color to paint with was bright blue with sparkles. These activities did get boring after a while. I could only go to the playground so many times before it got old.

Living in the hospital wasn’t all happy, absolutely not. Some of the methods used, especially chemotherapy would cause me a great deal of pain. I had monitors on my chest at all times that I called my “buddies,” which if in a bad mood, I’d loathe the sight of them. I ripped them out of my chest once when I had a really bad day. No toddler should feel this way. The doctors would try to give me medication after a surgery, so I would wake up calmer. Unfortunately, the medicine had the opposite effect on me. Once, I woke from a surgery, enraged instead of calm. I kicked my mother in the face and kept wanting to kick, so they had to put a pillowcase over my legs to keep them from flailing.

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To perform a lot of the procedures, I had to wear a white, tightly-woven mask type of cast that covered most of my face. The only holes were for my nose and I could only see a bit through the stitching near my eyes. It was terrifying for me. I felt claustrophobic and trapped within the mask. When they would reach to place it on me, I’d feel a chill run through my body. The cast was horrifying to an already scared three-year-old.

I hated the hospital nightgowns that I was forced to wear. I knew why they had to be worn, but I didn’t like how open they were, even at a young age. To help me feel more comfortable, my grandma came up with a useful solution. She bought me button-up pajamas, so the doctors could still get to my tubes without me having to wear the nightgown. After seeing how much I loved the pajamas, my grandma started donating more pajamas to the hospital and so did people from her church. She decided to create a donation group called Kirstin’s Kloset that held fundraisers and drives to collect pajamas for kids in the hospitals. It’s an organization that she kept up even after I left the hospital.

My family, especially my grandma and older sister kept me from going crazy. They would bring me activity books or just paper and crayons to draw with. My love for art was ignited while I stayed in the hospital. It grew even more when I was assigned an art therapist named Mike who help me cope with the procedures. It was thanks to him that I became less scared of the cast. He brought in a bunch of different colors of paint and we splattered them all over the cast so that it looked less scary. Art enlivened those bland hospital days of mine.

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When I was 5, I achieved remission, and got to go home. Going home to finally live with my family again was amazing news. I still needed to be monitored and endure therapy. I was assigned a physical therapist for my jaw since my right jaw bone had locked up from all the surgeries. I couldn’t open my mouth more than a centimeter. The therapist had to help me gradually stretch it out again by using tongue depressants. We’d start with one and then work our way up to more as my jaw loosened up. The pain was excruciating. I have painful memories that bring me to tears today of sitting on my grandpa’s lap, squeezing his thumbs as he tried to stretch out my jaw like the therapist advised. I still had feeding tubes that my family had to keep an eye on, and I still had to go to frequent check-ups, but at least I could sleep in my own bed again.

Going to school was hard because it was so obvious that people were trying to treat me like everybody else. It felt too forced, which was why I often kept to myself or hung out with my sister’s friends. The surgeries left scars on my cheek and I had lost my hair from the chemotherapy. The roots in my mouth were also loose, so when I lost a tooth, it wouldn’t grow back. On top of that, I also had no control over my nose. It would bleed or run, and I wouldn’t even notice until someone pointed it out. One of my teachers with good intentions asked my classmates to politely let me know when I needed to go to the bathroom to blow my nose. It was meant to be less embarrassing, but it just made me feel more self-conscious. I could be talking to someone and a classmate would walk by saying, “Hey, Kirstin, you got a little something,” as they would gesture toward their own nose. It was humiliating.

People were mostly nice, but I did have a few cruel kids over the years that had made fun of my appearance. I remember a few kids called me a boy while I was waiting for my hair to grow back after chemotherapy. I never handled these criticisms well. I’d shut down when I got upset and not say anything to anyone about how I was feeling. I felt like a burden enough already.

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Though I had dark times even after going into remission, there were a lot of positive moments, too. I spent a lot of time with my big sister, little brother, and our two cousins. We all loved spending time with our grandparents. My grandma, sister, and I took a special liking to art. My grandma taught me how to watercolor and make jewelry. When I was in the fourth grade, she was also able to enroll my sister and me in an art class at a gallery where she knew the owner. That class is where I began to develop more of a craft. We painted, sketched upside down, and did Styrofoam prints. My favorite project was when I drew blue people with rainbow grass in the background. It was one of my more detailed pieces that inspired my drawing style today.

When I was in the fourth grade, my parents decided to get a divorce. A little after the separation when I was about 11, my mom got a new job in Allen, Texas and we moved with her. We spent three years there before we moved to Cincinnati, Ohio the summer before I started 7th grade. School got easier over the years, and I was able to make a few friends. Though most of my free time was spent drawing or making jewelry. After taking a few jewelry classes in high school, I was hooked. I even made a little money, making bracelets for people.

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Without any teeth, it was hard to feel like a regular girl. I had to cut any food I ate into small pieces and could eat mostly only soft foods. My mom had done research to discover that reconstruction surgery for my face was possible but finding a doctor would be difficult. So, in 2017, after years of searching, we found a doctor in Ohio that could perform the surgery. After the consultation, the doctor told me we would have to do the reconstruction before I reached 20 or I wouldn’t have any teeth left. We scheduled the surgery for June 20, 2017, and I was happy to be given a date that took me one step closer to feeling normal.

The closer I was to the date of my surgery, the more nervous I had become. I began to feel just as terrified as I did at three years old. What if something went wrong and they couldn’t fix my face? The first night after the surgery when I was healing, that fear was too much for me. I had a trach in my throat and I couldn’t move since they’d taken a bone out of my leg. I felt trapped. I couldn’t speak, and I couldn’t move. It was an agitating feeling. I wanted to scream, but nothing would come out. My mom was asleep in a chair next to my bed, but I couldn’t speak to tell her. All I wanted was to hold her hand. I cried silent tears, assuring myself that I’d get through the night.

They booked the operation room for 8 hours, but it ended up lasting 10. I had 3 different surgeons. The first surgeon initiated the incision on my neck to remove my jaw and teeth. The second surgeon took my right fibula, muscle, skin, and an artery from my calf and cut the bone to fit with titanium plating to help connect the newly crafted jaw to my existing facial bones. The third surgery was performed by a vascular surgeon who then tied and connected the artery, so it was alive and functioning. Finally, I had a skin graft from my thigh to cover the calf incision. I’m not sure when, but at some point, a trachea was put in to assist during recovery, as well as an NG tube for food, through my nose.

The surgery didn’t have any complications, though I had to wait 11 months for my dentures to be made. My mouth was shrunken in like I had sucked on a sour lemon since I didn’t have teeth to form my face. I didn’t want to go out looking like that, so I mostly stayed inside. It was like waiting to be a person again.

But something interesting came out of this time. I decided to observe myself introspectively through self-portraits both before and after the healing process. Each day that I felt enough energy to, I would stare at myself in the mirror and sketch what I looked like to show how I progressed. I received my dentures a month ago, and my life has been forever changed. After years of feeling self-conscious, I can finally smile. I smile all the time now. I can’t help it. After years of not feeling confident enough, it’s one of my favorite things to do.

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I’ve been in remission for 12 years now, though I still deal with cancer’s aftermath. I’ve counted 12 scars from my surgeries over the years, and I know I have enough medical paperwork to fill up an entire hospital bed. Though it made my childhood difficult, I did gain some valuable lessons from it. From being in the hospital, I learned to be around all kinds of people and seeing the beauty of diversity. It has made me a much more accepting person that can befriend anyone.

It’s so important for people that have a family member going through an illness like mine to be supportive and there for the afflicted. Hold their hand, remind them that it will be okay. Sometimes, that’s all we need. Through my family’s support and my ability to escape through art, I’ve recovered from the darker times in my life and see a hopeful future. After it all, I’m ready to face the world head-on, with a smile.

Section Break

This is the story of Kirstin Wobig

Kirstin, 19, currently lives in Cincinnati, Ohio with her family. At age three, Kirstin found out she had a rare type of cancer in her cheek that affected her life long after she went into remission. Just last year, she was able to have facial reconstruction surgery to help fix some of the scars she endured from the childhood surgeries. Her grandmother’s organization, Kirstin’s Kloset, is still running and taking donations today. Kirstin is planning to go to college, and she’d like to pursue something related to art, at least as a minor. She continues to make jewelry as a little side business and loves to create origami. She always creates paper cranes out of whatever she can find at public places and peoples’ houses. She would like to go to Europe, especially Greece. She loves the architecture there. Kirstin hopes that others who are sick can find good support systems to help them as they go through testing and surgeries like she had.

 

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This story first touched our hearts on June 08, 2018.

| Writer: Kristen Petronio | Editor: Colleen Walker |

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