I’m 16 years old and a McCracken County High School student. I love being outdoors, driving tractors, and helping my dad on the farm, sometimes moving things from one field to another with equipment and moving trucks. I also love shopping and spending time with my friends. I have adopted a cat during my journey, and she is my therapy.
The year 2020 was a year that changed my life. I was a happy-go-lucky girl, enjoying life to the fullest until one day a headache sent my life on a very different path. Of course, I have had headaches before which Tylenol and Motrin could take care of. Then I began to have more frequent headaches and thought that being on my cell phone was the root of the problem (as my mom tried to tell me). I found myself staying in my room a lot and it felt better to be in the dark. My mom thought I was depressed, so we went to see my doctor and got some medication. Things got somewhat better, but then I started having headaches again; I began vomiting, and overnight I began experiencing double vision from my left eye. These headaches were different from the average ones I’d had before. It felt like a band squeezing around my head. I had an upcoming eye appointment, so we started there because I’d just gotten new eyeglasses.
On September 1, 2020, my eye doctor noticed massive amounts of fluid behind my eyes, enlarged orbits, and some fluid on my brain. They also saw some spinal fluid trapped around the top of my head. My Primary Care Doctor was notified before I left, and that’s when things “got rolling.” Immediately I was taken to Baptist Health in Paducah, Kentucky for an MRI of my head and spine. The news we received changed my life and the lives of my family members forever. “Your daughter has a brain mass.” We were immediately sent to see the neurosurgeon at Baptist Health. Frightened, I walked there in my parent’s arms.
The doctor confirmed that I had a brain mass, which was consistent with medulloblastoma—brain cancer. We were all speechless, crying, with no words to say. I remember asking the doctor if I could go home and get some things together. He told me I could not leave the hospital because of the mass. My mom and dad decided to send me to Monroe Carell Jr. Children’s Hospital at Vanderbilt. That night the intensive care ambulance from Vanderbilt took me from Baptist Health to their hospital. My parents could not ride with me in the ambulance, making me even more scared. My mom followed us there, and from that moment on I needed my mom and dad more than ever. When we got to the hospital, they greeted us at the door. I spent the night in the ER until they had a room for me in the pediatric intensive care unit. I got there at 1 AM, and it seemed like I was there for an eternity. I was monitored there for three days before my surgery.
On September 4th, 2020, I went to surgery for 10 hours. I underwent a craniotomy, which is a total resection of a brain mass with the placement of an external shunt due to hydrocephalus. I had an orange size tumor on my brain stem. Of the 10 hours, it took 4 hours to remove the mass itself.
Another important day for us was September 8th, 2020, when we met with an oncologist. Again, the most devastating news my parents received was, “your daughter has brain cancer, which is called medulloblastoma,” and this was the final confirmation from pathology My parents walked out of the room to talk to the doctors; it felt like an eternity during this time and the nurses tried to console me. A bit later, I remember my mom holding my hand and talking to me until I asked what the doctors said. Tears flowed, and she told me again what the diagnosis was.
I received physical, occupational, and speech therapies on that same day. I had to learn how to get up and sit on the side of the bed, take my first steps after surgery, and things started looking up somewhat. My appetite was getting better, and Chick-Fil-A and water had never tasted so good to me.
I ate just about anything that was in front of me. As my strength improved, I was able to get up more and sit in a chair. The various therapies got easier as the days and weeks went on, however my speech had been affected after the surgery and I couldn’t talk for two to three weeks. My balance was also affected.
After 2 ½ weeks in the PICU, on September 18, I was transferred to a regular floor. Finally, on September 19, I was discharged from the hospital to go home. It was a tough transition, but I did okay.
October 6, 2020, I left for Barnes Jewish Hospital to receive 30 rounds of proton radiation and six rounds of chemotherapy. Every day I had physical, occupational, and speech therapies. Mom and I stayed in St. Louis during the week and got to come home on the weekends. Those were busy weeks and days for me with the radiation, chemotherapy, and therapies. I will say this, I tolerated the radiation and chemotherapy well, and did not experience any issues with that part of my journey.
On December 29, 2020, I had to return to Vanderbilt where I received my first in-patient admission, which would begin one of nine cycles of chemotherapy treatments. I tolerated all the chemotherapy very well with no hospital admissions, and only 1 ER visit due to being neutropenic. However, I did have 2 platelet transfusions in the end.
On February 10, 2022, I had an MRI, and received the news that after all the chemotherapy treatments I have no evidence of the disease!!
I would like to say, always have faith and never give up. The world still turns even when life throws you a curveball. Hold on to your dreams and keep moving forward. Don’t look back at yesterday, look forward to tomorrow and what the future holds for you. Never ever give up!
Written by Emily Dulworth