Ependymoma Awareness Day: April 1, 2012

My brain tumors were rare. They're called "ependymomas," and not much is known about them.

They are slow-growing tumors that appear more often in children than in adults. In children, they are more likely to develop in the fourth ventrical of the brain (that's where mine were...always a child at brain). In adults they are more likely to appear in the spine. Cells can travel through the spinal fluid, sort of like dandelions spreading their seedy tufts, so tumors can spread or reappear in other places of the brain and along the spine where spinal fluid flows.

Their danger lies in where they grow. Both of my ependymomas, for example, grew in the fourth ventrical of my brain, a kind of holding tank for spinal fluid before it exits the brain's water system and enters the spine. When I was diagnosed, my first tumor was the size of a plum and was growing into my brainstem. Had it grown large enough to cover my fourth ventrical, I would have had hydrocephalus, a swelling of the brain due to too much water. (Hydrocephalus was common among European royalty in the 19th century due to inbreeding. This supports my theory that I am royal...and no, Dad, I do not mean a royal pain.)

These tumors are classified by a grading system. (I've always hated grades.) Grade 1 tumors are the least likely to spread or return. Some doctors do not call them cancers. Grade 2 tumors are more likely to spread than Grade 1 tumors, but less likely than Grade 3 tumors. (My tumors were grade 2). Some doctors do not call these tumors cancers either. Grade 3 tumors are the most likely to spread or recur. Everyone calls them cancerous. I think I have all of this right. This much is known.

Much is not known, however. No one knows why this disease occurs. There is even disagreement about whether this tumor that can spread and return is officially a cancer or not. There is no understanding about why the tumor can sometimes be seen in multiple family members or neighbors. Ependymomas are probably multiple diseases under the umbrella term "ependymoma," but we don't know that yet, either.

This lack of information impacts those of us with ependymomas. It affects treatment options, life expectancy, and disabilities resulting from the tumors and treatments. It affects whether people with ependymomas can get life insurance.

Clarity on the cancer classification is important. Funding for research designated for cancer research cannot currently go to ependymoma research because the World Health Organization does not classify it as a cancer. More research is needed to support this classification. Circular, yes.

People with ependymomas and our advocates are working to get more support for research on the disease. The Collaborative Ependymoma Research Network (CERN) is a research group working to apply more resources toward understanding this disease. This year, they are initiating "Ependymoma Awareness Day."

For more information about ependymomas and CERN, go to their new video called “Advancing Patient Care; Working for A Cure”.  www.cern-foundation.org

They are also promoting awareness through the symbol of a butterfly. They explain, "We’d like to start with the butterfly symbol: The butterfly is delicate and beautiful; hence it was chosen to represent ependymoma as it symbolizes rebirth and hope."

The symbol's a stretch. I'm pretty sure thast they don't have an English major on their staff. I'm guessing they rather intend that the butterfly is a symbol of ependymoma research, as the research may provide rebirth and hope. The tumor does not. Or if it does, it provides hope and rebirth in the same way that a heart attack or death might.

The foundation is more articulate about its other plans: "There will be a mass butterfly release on April 19, 2012 (with a rain date for April 20) that will coincide with a gathering of researchers who are studying ependymoma and working to develop a cure. The butterfly release will be posted to the internet so that patients, families and supporters around the world can participate and share in this moving event!

To participate in the inaugural Ependymoma Awareness Day, we encourage you to purchase a butterfly to memorialize a loved one, or simply to demonstrate the need to create greater awareness of this poorly understood disease. To purchase a butterfly (or several butterflies!) please visit the CERN Foundation website at www.cernfoundation.org ."

You may also promote awareness by wearing an Ependymoma Awareness Lapel Pin! These colorful die-cast metal pins feature the ependymoma awareness butterfly graphic and can be proudly worn to show your support of our cause everyday! To obtain your lapel pin, click here."

I think I'll wear a pin and offer to help them with their thinking about symbols. Who says an English major isn't practical?

Mary