Stories of Inspiration: On to the Business of Being a Kid

Shelly is an athletic, pretty, spunky, 11-year-old girl.  To watch her, you would think she is a healthy, carefree, limitless child, but the truth is, only the limitless part is true.  She has Neurofibromatosis Type 1 and a brain tumor.

Born three months premature in Russia, she would then spend the next five months in an orphanage until, by the grace of God and wonderful blessing of adoption, my husband Greg and I became her very proud parents.

Although she met many of the criteria of possibly having Neurofibromatosis (NF), it wasn’t until the age of 2 1/2, that Shelly was diagnosed with a brain tumor and NF1.  Unfortunately, this diagnosis came only after the tumor engulfed her left optic nerve, blinding her in that eye, and spread to her chiasm and right optic nerve. She had surgery to remove the operable parts of the tumor, and then spent the following 60 weeks receiving two types of chemotherapy to stabilize what remained.  Although the chemo did not shrink the tumor, it did stabilize it, and there has been no growth for the past seven years… Praise The Lord!

Shelly wears a prosthesis in her left eye, has had to undergo several operations relating to NF1, has yearly MRI’s and CT Scans, and is seen regularly by many specialists.  Despite all of this, she never feels sorry for herself, nor expects others to.  She just deals with the challenges like a real “trooper”, then goes back to the business of being a kid.

It is very, very hesitantly that I say Shelly is “lucky”… but she is!  Lucky because some brain tumor patients don’t get to be a “Seven-Year Survivor”.  Some do not respond to the treatments to stop growth and lose complete vision.  Some have to endure radiation that will forever affect them.

My hope is that the declaration of May as National Brain Tumor Awareness Month will soon recruit a multitude of new “Tumor Troopers” who will enthusiastically raise money for research, even before any loved one of theirs is affected by a brain tumor.


About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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