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Ependymoma survivor overcomes vision loss, making music career 'a real possibility'

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TrevorAdams514.jpgBy Trevor Adams

After my ependymoma treatment, I thought I might not ever be able to play music again. But fast-forward four years, and I am about to transfer to the University of North Texas School of Music Composition, where I'll study French horn and large form orchestral composition.  


Suddenly, my dream of becoming a great composer is becoming a real possibility. But the road to achieving my dreams has been a long one due to my ependymoma diagnosis.

My ependymoma symptoms
I first noticed my ependymoma symptoms shortly after my high school graduation when my high school marching band took an end-of-year trip to an amusement park. I planned to ride the biggest roller coaster 20 times that day, yet I stopped after about the sixth ride because I was beginning to have total visual blackouts.  

On the first couple of rides, it only happened at the bottom of loops when all the blood rushed away from my head. I figured it was low blood pressure and didn't think much of it. But later, when I told my doctors this, they said they were amazed that the brain tumor hadn't ruptured, causing internal bleeding.

For the next couple of weeks, I began to notice disruptions in my vision. It began as blurred vision and progressed to small "gray area" blind spots. Eventually, I could hardly see any detail at all. It was as if I were staring into a misty fog at all times. But all this time, I never experienced a headache -- one of the most common brain tumor symptoms.

I went to see my general physician, who thought my vision loss may have been caused by optic migraines. He scheduled an MRI as a precaution.  I remember the silence in the car when driving home with my parents. On the way home, we received a call from the doctor's office telling us to come see him right away.  When we arrived, he asked us to step into his office. He said I was harboring a relatively sizable mass within my left occipital lobe, and surgery was scheduled to remove the tumor. I had ependymoma, a rare type of primary brain or spinal cord tumor.

Celebrating life after ependymoma surgery     
After a brain surgery and proton therapy removed the tumor, I was left with blind spots. I thought I'd never be able to pursue music in college. I couldn't read music at a competent speed.

But over time, my vision started to return. Many of my visual difficulties were due to my optic nerve being swollen from the tumor, surgery and radiation. From my field of vision tests and other examinations, my ophthalmologist noticed that my damaged nerve tissue was not only recuperating, but healing and repairing.

Last year, the help of a very generous scholarship from MD Anderson's Children's Art Project allowed me to continue my school work, and now I'm ready to transfer and continue studying music.
    
I am grateful that through the course of all that has transpired, I have forged a new perspective on life and level of determination, which I may not have ever developed. I have come to see that none of us are promised a long life.  I am also grateful that God has delivered me into the excellent care of the people at MD Anderson. They are all a blessing, whether or not they realize or even acknowledge it. All of them, from the radiologists and oncologists to the workers, researchers, and volunteers with organizations like the CERN Foundation and MD Anderson's Children's Art Project.

If I should live a long life or be stricken once more with my disease, I will consider my time here to have been all the more full because of the efforts of such people.

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