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Patient StoriesBrain CancerPediatric Cancer

Medulloblastoma Is a Beast

What started as persistent headaches for Emily Dulworth soon turned into vomiting, double vision, and a diagnosis of medulloblastoma, the most common type of brain cancer in children and adolescents.
June 2022 Vol 8 No 3
Emily Dulworth
La Center, Kentucky
Photo by Gina Ray.

I’m a 16-year-old 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.

Better in the Dark

My life was changed in 2020. 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 that 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 that I was depressed, so we went to see my doctor, and I got some medication. Things got a bit better, but then I started having headaches again.

I began vomiting, and overnight I started having double vision in my left eye. These headaches were different from the average ones I’d had before. They felt like a band squeezing around my head.

I had an upcoming eye appointment, because I’d just gotten new eyeglasses.

On September 1, 2020, my eye doctor noticed massive amounts of fluid behind my eyes, enlarged orbits, some fluid on my brain, and saw some spinal fluid trapped around the top of my head.

Things “Got Rolling”

My primary care doctor was notified, 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,” my parents were told. We were immediately sent to see the neurosurgeon at Baptist Health. Frightened, I walked there in my parents’ arms.

The doctor confirmed that I had a brain mass, which was consistent with medulloblastoma, the most common type of brain cancer in children and adolescents. We were all speechless, crying, and found no words. 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 in Nashville, Tennessee. 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 emergency room, until a room became available for me in the pediatric intensive care unit. I got there at 1 AM, and it seemed as if I were there for an eternity. I was monitored there for 3 days before my surgery.

On September 4, 2020, I had surgery, which lasted for a total of 10 hours. I underwent a craniotomy (a total resection of a brain mass) with the placement of an external shunt because of hydrocephalus. I had an orange-size tumor on my brain stem. It took 4 hours to remove the mass itself.

Diagnosis Confirmed

Another important day for us was September 8, 2020, when we met with an oncologist. Again, my parents received the most devastating news, “Your daughter has brain cancer, which is called medulloblastoma.” I remember my parents walking out of the room to talk to the doctors, which felt like an eternity, 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.

After the surgery, I had 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, and take my first steps after surgery. Things started to look up gradually. My appetite was getting better, and Chick-Fil-A and water had never tasted so good.

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 about 2 to 3 weeks. My balance was also affected.

On September 18, I was transferred from the pediatric ICU to a regular floor, and a day later I was discharged from the hospital and went home. It was a tough transition, but I did okay.

Photo by Gina Ray.

Therapy

On October 6, 2020, I left for Barnes Jewish Hospital in St. Louis, Missouri, to receive 30 rounds of proton therapy (a type of radiation) and 6 rounds of chemotherapy. Every day I also had physical, occupational, and speech therapies.

My mom and I stayed in St. Louis during the week and went home on the weekends. Those were busy days and weeks for me, with the radiation, chemotherapy, and therapies. I must say that I tolerated the radiation and chemotherapy well, and did not have any issues with that part of my journey.

On December 29, 2020, I had to return to the Vanderbilt hospital where I was first hospitalized and where I began the first of 9 cycles of chemotherapy treatments. I tolerated the chemotherapy very well, and only had one emergency room visit for neutropenia. However, I did have 2 platelet transfusions in the end.

Good News at Last

I had an MRI on February 10, 2022, and received the great news that I have no evidence of cancer. I have adopted a cat during my journey, and she has been my therapy.

My advice is—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!

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Last modified: June 20, 2022

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