Malia's Big Journey
Hello, My name is Nichole, the mother of a sweet little three year old girl name Malia. Just a few months ago Malia had been diagnosed with a Dysplastic Gangliocytoma Cerebellar Brain Tumor, a rare condition called Lhermitte- Duclose Disease. This tumor is one that is mainly found in adults in their third stage of life, but somehow formed itself in my baby girls little head. In the middle of her first surgery the doctors told us that the type of tumor she has was unrecognizable, because in the beginning of this journey we were told that she would be getting a Glioma Tumor removed partially, and the rest eventually treated with radiation and or Chemo.. But then everything has changed. 18 Samples were taken to determine what kind of tumor Malia has, and just that surgery had caused Hydrocephalus in witch we had to have an emergency drainage tube placed in, and eventually a permanent shunt. Malia's eye sight is depleting at a rapid rate witch is baffling the doctors, because the tumor is in the part of the brain that should have no effect on vision loss, and only her vision and head tilt. We were just told the other day that her tumor is un-removable because the size is large, and beginning to wrap around her brain stem. We will be needing an MRI in two weeks to check the growth and to see if there are any lesions in her spine. It is a hard situation to swallow as her mother, but we hope that it stays slow growing, and can be treated with chemo.
Malia has been more than amazing in having to endure all of this in such a short amount of time. She is wise beyond her years, and such a fun loving little girl and if anyone can beat this, I know she can! she has not complained once, and is more concerned about how others are feeling. She always has a smile on her face, and has brought the gift of never taking any moment for granted, and shows us everyday how precious life really is. (I love you my brave little hero)