On September 23, 2015, we went for a simple eye exam. The doctor could tell something was wrong behind her right eye. Before we knew it, we were in seeing a specialist for her eyes 2 days later. That Sunday, she started having balance issues and Monday we took her to the Children’s ER. That night, after her MRI we were told she had 3 brain tumors around her pituitary gland and optic nerves.
She was admitted for more tests and 4 days later discharged home. On October 9th, she had her craniotomy-neuro surgery. Tumors were de-bulked and cysts were drained. Unable to remove it, 6 hours of praying and worry. We got the diagnosis of Craniopharigima.
She has lost vision in her right eye which is permanent. She is on medication for pituitary gland-related issues. She is currently receiving Proton Therapy – radiation to her cyst tumors. This is a life long change for her. She will always have to be checked for regrowth because of high recurrence rate and additional cysts that may form.
She will always be on medications for pituitary hormone replacements and blind in her right eye. She is a strong and courageous little girl with a smile that brightens any room. She will tell you “God’s got this!”