Wednesday, April 18, 2012

What is ependymoma and why should I care?

Earlier this week I got an email from Ms. Bonnie Culbertson on behalf of the CERN Foundation asking me to promote the Ependymoma Awareness Day which is tomorrow, April 19th.

My first reaction was “What is Ependymoma?”  While I don’t claim to be a brain tumor expert, I do feel like I know a bit more than the average mope about brain tumors: I’ve had a brain tumor, I write about brain tumors, and people write me about brain tumors.

So I opened up Mozilla and went to my trusty ABTA bookmark to learn at least something about Ependymoma.

According to the ABTA, “Ependymoma is a rare type of primary brain or spinal cord tumor. Primary brain and spinal cord tumors are a type of tumor that starts in the central nervous system (CNS).

I didn’t like the sound of that.  My Meningioma never penetrated my CNS (that I know of). Ependymoma starts there…which can’t be good.

Then I read that “These are relatively rare tumors, accounting for 2-3% of all primary tumors.”  Well that explained why I hadn’t heard of it. I’ll also bet that, because it’s rare, Ependymoma gets less than its fair share of research dollars

The ABTA article went on to say “However, they (i.e. Ependymoma) are the most common brain tumor in children. About one-third of pediatric brain tumors are diagnosed in children under the age of three.”

Argghh, that fact hit me right in the emotional soft spot. I hate it when small children suffer.  I remember waiting in the surgical staging area for a craniectomy when two parents brought a scared little girl in for surgery. She was spooked by the gowns, the strange people wearing masks and the strange place. I don’t blame her; I was spooked by the same things. Her mother and father struggled to calm her down as they put the gas mask on her face. Her terrifying cries still haunt me a bit today.

So as you may guess, I wanted to know how the CERN Foundation was going to creatively and memorably build awareness about Ependymoma Awareness Day.  I was thinking skywriting, interviews on Good Morning America or maybe an email blast (or as I first spelled it, “blash.”)

Then I remembered that this is a rare form of brain tumor and they probably have a similarly “rare” budget. So instead of an email blast, or even a blash, I was expecting a small email “pop.”

Not surprisingly, they were way ahead of me.  According to their website, the “CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place during the semi-annual CERN investigator meeting on April 19, 2012…The butterfly release will be streamed on the internet so that supporters around the world can participate and share in this event “

Well now, that’s kinda cool, so I bought one.  I plan to be watching the release tomorrow and, hopefully, picking out my butterfly. (Personally, I think Blue Morpho butterflies are the prettiest.)

Here’s the link to the CERN Foundation website where you, too, can buy a butterfly:

And if you're a Blue Morpho fan, here's a link to a nice picture of one:  


Just another John said...

Kudos to you for keeping your sense of humor! I too am an adult with Ependymoma (AND a sense of humor about it!). My first surgery was in 1998, and I currently have 14 tumors on my spine and in my brain. Total of 4 surgeries, plus 3X lifetime dose of radiation to my lower spine (lower doses to other areas), plus I've been on Chemo for the past five years! Surgery number 5 coming up in a couple of weeks. A sense of humor makes a HUGE difference! I was told I had less than a year to live about 5 years ago now. Good luck to you!

Trish Adkins said...

Thanks for this post. My 6-year old is an ependymoma survivor. She was diagnosed at just 14 months old. Thank you for spreading this awareness!!

Anonymous said...

Great post - thanks for spreading the news about CERN. Good luck on your journey, mine continues, thankfully!

Unknown said...

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John's Brain said...

Thanks for reaching out! I just bought my butterfly for this year's fund-raiser...and am still hoping for a blue morpho


Anonymous said...

I am also a 2 time, adult Epenymoma of he brain survivor, WHO grade 3. It continues to be a long load that I continue to travel. I choose to focus on the happenings of today...I leave the past where it belongs, in the past. I will worry about tomomorrow when tomorrow arrives. Awareness is the key to everything that surrounds our lives. Keep strong and live!

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