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It All Ended …

Published on August 12, 2014 in Share Your Story

It All Ended …


When Avah was 18 months her pediatrician recommended a specialist of doctors that deal with development delays for her lack of not walking. So we went and he referred us to the school district. So in the past few months she has had a physical therapist who worked her with getting orthotics to help making her walking more stable and a speech therapist because on her evaluation they noticed that she wasn’t talking as much as she should at this age. She had a follow-up appointment at the specialist to see how much she has progressed.

He was happy to know that she was walking and running very well. But he was concerned about her speech development. So he decided to send us to get a speech therapy evaluation, a pre-op and an MRI. He wasn’t too worried about it, but he needed to rule out anything going wrong in her brain so he could narrow down possibilities. Her MRI happened to fall on a day I was working so my mom took her. I walked out to the lobby of the center to see my mom sitting on the chair with my daughter on her lap. Her face was red and she clearly had been crying. I didn’t understand.

“Kenzie, she has a brain tumor.” I was in denial.

“What? NO!” My mom knew nothing. That was all the doctors told her and there was an appointment set up the next day with a neurosurgeon.

They showed us the scans of the MRI and explained that the mass/tumor is sitting on the optic nerve that is leading it to the brain. She said that it was certainly not a recent development because she would be in a lot of pain and not acting normal.

So it’s possible she has had this her whole life. She was leaning towards two diagnosis’ Craniopharyngioma or glioma. Craniopharyngioma was way more severe and would possibly require radiation which can be very dangerous for young children. The neurologist required us to get an eye test, see an endocrinologist and an oncologist, another MRI to see the spine, and visit her where we will discuss surgery and will also need a stealth MRI.

We were able to get the eye test taken care of that day and they had no reason to believe that she had any kind of vision problems which I pretty much knew before hand. We got the MRI and oncologist appointment scheduled for the following week.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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