It’s hard to know exactly when Kaylie’s journey began. She had nausea/vomiting, blurry vision, headaches for approximately a year before her craniopharyngioma diagnosis. She was referred to multiple specialists with no answers. Kaylie had a normal results from multiple tests. Finally, in October 2022 when we went to the ophthalmologist due to Kaylie’s complaint of blindness in her right eye and she was referred to the ER right away due to the Dr. seeing something suggestive of a tumor on her pituitary gland.
We are very grateful for Dr Sharon Grubb.
Fast forward, Kaylie was admitted to Sacred Heart/Pensacola where we spent 8 days. She had transphenoidinal surgery where the tumor was removed through her nose. Unfortunately the neurosurgeon was unable to remove the whole tumor due to it being attached to her brain stem.
Kaylie missed quite a bit of school during this time so she is working on completing her sophomore year virtually.
Kaylie’s 6 month follow up MRI revealed the tumor to be getting larger and collecting fluid so radiation was recommended.
Unfortunately, Kaylie lost all vision in her right eye and it will not return. Her left eye is compromised as well but we still have hope.
Kaylie went through 30 rounds of radiation at The Institute for Proton therapy in Jacksonville. She is exhausted and her head is very sore and itchy but overall doing well.
Thank you for all the prayers and well wishes. We’ll take all we can get.
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