April 2018

Wednesday, September 5, 2012

Sept is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month, a time when other kids are going to school, and it's a good time to think about kids with cancer, too.

I  was probably a kid with cancer, but I didn't know it.

My neurosurgeon says that I was probably born with my brain tumor, an ependymoma. Perhaps he said that because ependymomas are more common in children than in adults, and perhaps it was because this slow growing tumor was plum-sized by the time it was diagnosed, so it must have had plenty of time to grow.

By the time of diagnosis, I had lived 43 years relatively normally. I had traveled and hiked and biked where ever I wanted to. It was a good life, and I'm glad I got to live it.

Five and a half years ago, I had neurosurgery to remove my first tumor and two years later, I had radiation to remove a second tumor from the same location.

Difficulties with balance, vision, and fatigue mean that I don't travel the back roads anymore; I hike on paved paths with help; I ride a trike on flat trails instead of riding my bicycle up and down Seattle's hills. I left my career in education. My life has changed.

It's still a good life, and I'm still glad I get to live it.

I thank the doctors and other health care workers who helped me to live and recover. I thank the researchers who learned how to remove a plum from the brain and brain stem and allow the person to live. I think that's amazing.

I feel fortunate that my first tumor was not discovered earlier. Twenty years prior to my diagnosis, I had a CAT scan of my brain to see if the doctor could determine why I fainted in front of my Southern Baptist congregation, but the scan did not reveal my tumor, so I graduated from college, taught and coached high school students, moved across the country where I hiked and biked, traveled to rural areas in Mexico, Central and South America, rafted down the Grand Canyon, safaried in Tanzania and toured Ethiopia.

Kids whose tumors are discovered earlier, perhaps because their tumors are more aggressive than mine were, don't get to live a part of their lives somewhat normally. They--and I--need more research on these tumors to discover what causes them and how to treat and even cure them.

The Collaborative Ependymoma Research Network (CERN) focuses on this tumor. If you'd like to learn more about the tumors and CERN's work, go to You can donate to the cause, too, a good way to celebrate these kids who are getting a different kind of education than those preparing their backpacks and lunch boxes.

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