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Ava Jordan

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Ava was diagnosed with epilepsy September 2010. She had multiple tests and hospital stays and medicine never helped her correctly. 
 
We were at Cook Children's Fort Worth in January 2014 for a week to see if Ava was candidate for epilepsy surgery. It was a week full of EEG's, multiple scans and MRIs. Ava was then diagnosed with a brain tumor PXA/GG mix BRAF mutation (benign) 4x4x4x4 on her left temporal lobe which extended to brain stem. 
 
She had two surgeries: one on February 7, 2014 and one on April 1, 2014. She was doing amazingly as soon as she got out of hospital. After a month long stay from her first surgery we had a 9 year old little girl full of life and running and playing like she had not done in a while. We thought that with the second surgery and having more tumor removed, it would only get better and felt more relieved since the tumor was so large. 
 
During the Memorial Day weekend Ava had her first seizure since the surgeries and went to the ER. Scans were done and they looked the same as they did after her second surgery scans. I knew something wasn't right and as time went on Ava had more and more severe headaches and was not active anymore. She was in bed for most of the day. Finally after multiple calls to doctor and nurses trying to assess the problem, on July 1, 2014 Ava had some more MRI scans and the worst results were given to us. The tumor came back and it was bigger and angrier than ever, and it had metastasized to her spinal cord. 
 
Ava was put on hospice and we were told she had maybe 30 days left if we didn’t seek treatment. If we decided to have aggressive treatment done, we could possibly buy some time. We started radiation/chemo the very next week. She was doing well and on week 3 scans there was signs showing positive results and we thought we were doing well. Her blood counts always were normal until the last week of treatment. Her counts dropped slightly and were low enough that she got an infection. Fast forward to September 7, 2014 and after 2 weeks in ICU, Ava passed away. She had just turned 10 on August 20th. 
 
We miss and think of her every single day. 
 
Information provided by Gina Jordan, Ava’s Mom
March 2015

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