Lorelai

My name is Lorelai Kinzer. At age 10, I was diagnosed with an incurable brain tumor. I was in fourth grade. Every day I would go to the nurse’s office complaining of a headache and stomachache. As this continued my mom thought that maybe it was because of vision problems.

So, she took me to the eye doctor. The eye doctor started to do all kinds of tests to figure out what was wrong. When he examined me, he noticed that I had lost my entire right peripheral vision in both eyes. So, he ordered me to go in for an MRI.

The day of the MRI I was really scared. If it was bad enough that they needed to do more tests, something must have been wrong. My mom told me that the MRI was like a giant X-ray for my brain. Mom said it was a big machine that was going to make a lot of noise. But it would hopefully help us figure out what was going on. My mom also said I was going to have four tests done.

When we got to the hospital a nurse took us back to a room and told me, my mom, and my dad to change into a gown. Then she took us back into a room with a long hallway. The nurse told me and my parents to stand in front of a metal detector because we couldn’t have any metal in the MRI. Then she told me to pick out a movie to watch while in the MRI. She laid me down on a bed-type table and told me to get comfortable. Then she put earplugs in and headphones on me. The nurse gave me a tube that had a smooth ball on it. She told me that if I needed anything while in the MRI to squeeze the button. I looked at my mom and dad one last time, a little nervous. Then she pushed a button and the table moved into the machine. My mom was right, the machine made a lot of loud noises.

After the second test, the nurse pulled my mom out of the room to talk to a doctor on the phone. While talking to the doctor my mom heard “oncology” and that we would have a meeting with them the next morning. Because she heard oncology, she immediately knew that meant cancer. They didn’t do any more tests after that. After I was done with the MRI the nurse came in and pulled me out of the machine. She took off the headphones and then she led us back down the long hallway and into the room so I could change back into my clothes.

The next day we had a meeting with the doctor. They told me I had a brain tumor called craniopharyngioma. I didn’t hear anything after that. My parents and the doctor discussed options and determined surgery was needed ASAP. One week later I went in for surgery. We went up to the floor. This group called lifestyle medicine came up. They walked me through what was going to happen. They allowed me to pick out a scent to have with the anesthesia mask. They said it would help with the smell. The next thing I knew I was slowly waking up in another room. My parents were sitting right next to me. My mom told me the surgery went well.

We were in the hospital for about three weeks. I tried to sleep as much as possible. But every time I was close a nurse came in to do another blood draw. I had a favorite nurse while I was there. He took me for walks around the hospital and gave me ice cream when I was feeling down. Three weeks after surgery I went in and started radiation to help kill as much of the tumor as possible. I had to do radiation therapy five days a week for seven weeks. Each treatment took about thirty minutes. Radiation took my entire summer.

After treatment, we were told that I would have to be monitored for the next 15-20 years of my life.  That means MRIs on a regular basis.  Initially, every month, then every 3 months, then every 6 months, and eventually, only once per year.  But, for a long time.

I was also told that the damage to my brain, from both the tumor and radiation, would require me to be put on a variety of medications to regulate some hormones for the rest of my life. Some of these medications are thousands of dollars a month.

The next year I returned to school. I have to have a lot of accommodations; but I am now in high school and am very successful with mostly A’s and some B’s.

Overall, I feel like this experience was both a curse and a blessing. I got to meet so many amazing people. But it will forever be with me. I think that without my brain tumor I would not be the person I am today.