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CERN Foundation Recognizes Childhood Cancer Awareness Month

Ependymoma Diagnosis

Learn about MRIs, the pathology process and prognosis statistics.

For more information, download a copy of the Ependymoma Guide, CLICK HERE.

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The Day Our Lives Changed Forever

CERN Inspiration Story
Our blessings
I was one who always wanted to be a mom and never thought it would ever happen. So, when I gave birth to my first child eight years ago, I was the happiest I had ever been. On my wedding anniversary, November 11, 2013, I was blessed again with a baby girl, Ava. I thought life was pretty perfect. When I was pregnant with Ava, my daddy passed away from lung cancer and having Ava helped heal my heart. I never thought in a million years I would be helping my baby girl fight for her life!
In September of 2014, I noticed Ava tilting her head to the right and she began throwing up. She could not move her neck, so I called her pediatrician and took her in for an appointment. The doctor said it was torticollis (a condition in which the head becomes persistently turned to one side caused by muscle spasms) and sent us home with some exercises to try at home, but nothing was working so I called the pediatrician. I just felt like something wasn’t right.
On September 11, 2014, we were sent to a hospital in Atlanta. That day, our lives changed forever. We were told Ava had a brain mass and she needed to have surgery. A couple days later, she had surgery to remove the tumor and we found out she was diagnosed with grade III anaplastic ependymoma.
Headed to St. Jude
After surgery, we didn’t like their treatment course and requested a referral to St. Jude Children’s Research Hospital, a participating CERN site, for a second opinion, and then for treatment for ten months. 

Participate in CERN's online ependymoma outcomes surveys! 

The Ependymoma Outcomes Projects are online surveys created for both adults and children with ependymoma. 

Your participation in this effort will allow us to continue to improve our understanding of the experience and current health status of those living with ependymoma. Research such as this would not be possible without the selfless contributions of patients like you. Treatment and quality of life issues are crucial with any patient group, especially for patients with ependymoma. 

Step-by-step survey registration instructions:

  1. Click on the link for the Adult Ependymoma Outcomes Enrollment Form OR the Pediatric Ependymoma Outcomes Enrollment Form.
  2. Once you have completed the online form, an e-mail notification will be sent to the project coordinator who will contact you with instructions to complete the Ependymoma Outcomes Questionnaire.

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