"Google it"

Contrary to the advice from my friends and family, I Dr. Googled.  (Dr. Google: term for using google as a medical resource ... usually resulting in incorrect self diagnosis and unnecessary anxiety.)  After finding out I had an Ependymoma I probably stayed up till at least midnight researching this type of tumor.
Majority of the sites repeated themselves, and this is what most of them said:

• a rare type of primary brain ( children) or spinal (adults) cord tumor  that starts in the Central Nervous System. 
• much more rare than brain tumours
• most common symptom is generalized  back pain and neck pain
• there are three locations of ependymomas -
• extradural (55%). - between the vertebrae and the spinal cord (risky). 
• intradural-extramedullary(40%)  - within the outer layers of the spinal cord but not inside it (high risk)  and
• intramedullary (5%) - inside the spinal cord (very high risk).
• most people aren't diagnosed until they start to lose motor control (an interesting fact that I came across a few times was that people with it high in their cervical spine are usually first diagnosed with carpel tunnel syndrome - I've notice from time to time that I will get pains in my left wrist, but  when it (i.e the pain) does happen I have always blamed it on the fact that I am left handed)
• details of the surgical procedure ... you can even watch it on YouTube - but it is not for the weak of stomach so don't say I didn't warn you. 

I went on to read that these Ependymoma tumors are the most common type of brain tumor in children. About one-third of pediatric brain tumors are diagnosed in children under the age of three. 

That hit me in the soft spot- HARD! As most of you know I have four children, I could not even begin to imagine any of my children having any serious medical disease, let alone a brain tumor, my eyes well up just thinking about it. For the record an Ependymoma is not genetic, so the chance of  any of my chldren having this tumor is extremely slim. If anyone in our family was meant to get this disease  I am glad It was me and not one of them. I am sure parents of the helpless children who fall victim to Ependymoma's probably wish they could have the tumor instead of their sweet angel child. 

I went on to discover the CERN Foundation ( Collaberative Ependymoma research network), A network dedicated to nothing but the research and awareness of Ependymoma's. 

As I navigated my way around their page I learned that there will be an International Ependymoma Awareness day on April 10th 2014. 

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 10, 2014…The butterfly release will be streamed on the internet so that supporters around the world can participate and share in this event “.

I was in awe when I discovered that the symbol for an Ependymoma was a butterfly, I am pretty sure I even started to cry when I found out. And this is why:

 I have been planning on getting a butterfly tattoo for quite some time now, but wanted to wait until I was done having children. To me the symbolic meaning is : the purpose of  the life of every butterfly is to set everything that was once known aside and to embrace an entire new way of being. 

If this isn't a sign for me to have faith, than I don't know what is!?

This is the tattoo that I have always wanted, and will most definitely be getting once this journey is over, especially now that it has even more significance and meaning behind it. 

So of course I went ahead and I bought a butterfly which will be released by people from all across the globe that have been affected by an Ependymoma. I will most definitely be watching the release online, and so should you! 

For more information on where you can purchase your butterfly visit the CERN website. 

https://cern-foundation.org/?page_id=4882

Hopefully this video will make you want to buy a butterfly and support ependymoma research. https://www.youtube.com/watch?v=Wnkz5H3jrhY#t=61

I hope from this day forward whenever you see a butterfly, you think of me and my family, and all the other families that are and will be affected by an Ependymoma.

-Eileen