The Faces of Brain Tumors
Katie Schools
Written by Susan & Chris Schools
Juvenile Pilocytic Astrocytoma
Glen Allen, VA
Katie is now 4 1/2 and has been living with a brain tumor for most of her life. She looks like your typical 4-year old. She attends preschool and loves learning, reading, dancing and playing with her little sister and her friends. She wants to be a teacher when she grows up. She also sees a number of specialists on a regular basis to monitor her growth and development and to keep watch over the tumor in her brain.
A "normal" life is a relative thing since Katie's brain tumor diagnosis. The week after her first birthday our world was turned upside down. A trip to the pediatrician turned into an overnight stay at the hospital. The next day, after what we thought would be a routine MRI, a neurologist was telling us a mass was found in Katie's brain. A week after her diagnosis she underwent a craniotomy and was in the PICU at one of our local hospitals. While in the hospital with Katie, the little bit of information given to us did not help or comfort us or prepare us to adapt to the radical change our lives had taken.
At 15 months of age, Katie started chemotherapy treatments at a hospital out-of- state and out of our HMO network. Trying to get the best medical care possible for our little girl was a battle that was hard fought and well worth the effort. She completed the protocol in November 2003,and the tumor shrunk almost 50%. During the time she was actively being treated she barely missed a step. She was able to have a more "normal" life because she was on a protocol developed by the leading brain tumor treatment center that is finding better, less harsh ways to treat children with brain tumors. This proves that all hospitals are NOT the same when it comes to treating a person with an orphan disease like a brain tumor. Insurance companies should not be allowed to dictate that a lesser qualified "in-plan" facility lacking the sub-specialists needed to best treat a patient be considered as a viable option.
Since completing her treatment, Katie sees doctors and nurses much less which has been a nice change for us. Her tumor, though, is growing again and we know Katie will likely need a new treatment in the very near future. We continue to research options and talk to her doctors to find the best drugs to stop the tumor while allowing Katie the time to enjoy being a child.
We have learned so much by scouring the Internet and joining on-line support groups and sharing information with others walking the same path we are. The brain tumor community helps one another; but for those new to that world, finding the right support is a great challenge. More funding is a necessity to help find a better way to treat brain tumors and give my child a chance to become the teacher she wants to be.