By: Chonel LaPorte

For Casey Patton, the most difficult struggle during her fight against a brain tumor was following her completion of chemotherapy. After being surrounded by a constant support system of doctors, nurses and her family for almost two years, Casey, then 18, was moving away from her Chicago suburb to attend college alone.

Most college freshmen have difficulties adjusting and making friends at first, but for Casey the loss of her close support system and her classmates’ lack of knowledge about her situation made college life confusing.

“Most people would think the hardest part about battling a brain tumor was when you are in the hospital receiving treatment,” she said. “The hardest part for me was when I stopped and suddenly lost my entire support system. None of my friends understood what a life-changing event this was. They thought that since I finished treatment everything would return to normal.  Unfortunately that is not how it works. I was very lost and didn’t know who I was.”

When Casey was 16 she had noticed she was having vision problems. At first, her mom thought she just needed glasses. Casey, a self-described overachiever, kept up with her busy schedule: taking difficult classes, playing varsity volleyball and performing in musical theatre. The day after she finished the Chicago Triathlon, she was diagnosed with an Optic Pathway Glioma, a benign brain tumor that threatened her vision. It later proved inoperable as it was wrapped around both optic nerves in her optic chiasm, the area where the two nerves cross. The day after her seventeenth birthday, Casey began chemotherapy treatments.

“My quality of life was practically non-existent,” she explained. “I had to withdraw from high school and quit volleyball.”

Despite enduring 13 months of painful and exhausting treatments, Casey was still able to graduate high school with her class and begin college at Illinois Wesleyan University studying musical theatre. Though her tumor had been deemed stable, Casey said she felt anything but.

No one had told her how difficult recovery from chemotherapy treatments would be or warned her of the psychological effects following such treatment. While at college, her immune system virtually collapsed.  She was sick almost every day.

“I didn’t anticipate how hard it would be,” she said. “I played club volleyball and I was in a sorority and was doing all my theatre stuff. But I had pneumonia twice and tonsillitis.  I was depressed and miserable. I had to drop out after my first semester to recuperate.”

After receiving treatment for some of the most formative years of her life, Casey said she felt that she had missed out on many opportunities and learning experiences of the usual teenager.

“While a girl is 16, 17, 18- those are major years of her life. There is a big emotional growth that I missed out on because I was busy trying to survive chemo treatments,” she explained. “A girl figures out who her friends are, what kind of person she wants to be, where she wants to go to college. I didn’t get to do any of that.  I tried to make up for lost time my first semester at college and it didn’t work our very well for me.”

After leaving college, Casey decided that she did not want any other teenager to struggle through the same situation, feeling confused and alone. She decided to apply to several schools for nursing, hoping to create a program to help teenagers who have battled a traumatic illness transition into their new “normal” life. She is currently waiting to find out which schools she has been accepted into.

“I decided I didn’t want to sing professionally anymore and I wanted to go into nursing,” she said. “I thought it would be a little more meaningful.”

After dropping her musical theatre major, Casey attended Illinois State University with the hopes of getting into their nursing program.  She completed three semesters before her tumor began growing again. She was forced to leave school and the volleyball team for the second time in order to move to Boston to receive proton radiation at Massachusetts General Hospital.

While receiving treatments at MGH, Casey and her mother stayed at Christopher’s Haven, a home-away-from-home for children and young people fighting cancer.  They were able to develop a community of support that Casey said has been important.

“Christopher’s Haven has been a blessing to us in so many ways. I’m glad we stayed here because we have formed this tight knit group with our neighbors,” she said. “Even though it never felt like home, it was the closest thing to it. We made some really good friends while we were here.”

Because it is a five minute walk to the proton center, it became an extra blessing as the weeks went by and Casey’s fatigue increased. She could walk back to Christopher’s Haven and rest in between appointments.

After all her experience, Casey said she hopes her transition back to regular life from treatment will be easier this time around because she is much more knowledgeable.  She plans on recuperating at home for the next few months and returning to college in the fall.

You can help kids like Casey. Find out how you can donate to Christopher’s Haven, or get involved in other ways. Thank you.