Birth Date - February 13, 2009
Main Diagnosis - Pilocytic Astrocytoma (Optic Glioma)
Theme: My Little Pony
Due Date: September 1, 2016
Caroline has always been developmentally delayed. When she was 18 months old and started showing signs of Neurofibromatosis (NF1), we had an MRI performed. It was at that time that we first saw some bright spots on her brain. These are common in NF1 and often go away on their own, so at the time we just watched them.
During the next while, she had periodic MRIs, but mostly we concentrated on the fact she was not speaking or walking well. It was determined she had Apraxia and she was placed in a developmental preschool as well as weekly Occupational, Physical, and Speech Therapy. She is now able to speak and walk. She wears braces on her legs to assist with her walking. At times she has to use a wheelchair due to fatigue and night blindness. The need for a wheelchair is much more common when she is on chemo.
In November of 2013, it was determined that the spot on her brain around her optic nerves and chiasm had become a tumor. She had peripheral field loss and pallor of the optic nerves as well (which signifies the nerve could be dying). This meant she had to have chemo.
The first regimen of chemo was Carboplatin and Vincristine. At the first scan there was a little growth, but not enough to be too concerned with so we went on with the regimen. Half way through the year long regimen, she had an anaphylactic reaction to the chemo and they had to stop using those drugs. The replacement drugs were Avastin and Irenotecan. She took these for the remainder of the year. The tumors never shrank, but they did stop growing. Six months later we had her port removed so she could go back to playing like a regular kid.
Fifteen months after treatment ended, a routine MRI revealed that she had relapsed. The tumor had not only started growing and enhancing again - it was growing in a new direction. She has since begun another one year chemo regimen.
Caroline adores the quilt and sleeps with it every night.
Thank all of you so much!!