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Jan 17, 2018 Latest post:
Aug 1, 2019
We have a 7 year old daughter named Alyssa. She had her birthday this past Friday and it was joyous for many reasons, but when Alyssa was born she was diagnosed with a neurological disorder called "Neurofibromatosis" or NF1, for short. NF1 causes tumors to grow anywhere on the nervous system: skin, bones, spine, brain and optic nerves are the most common. She has lived her last seven years with minimal symptoms of this disorder and most people would never, ever know she even had it. Unfortunately last Friday, during a routine MRI, a rather large and "nasty" tumor was detected on her left optic nerve. It's greatly impacting her vision in that eye, so much so that she can't see the "big E" on the eye chart any more (last April she had 20/20 vision). The tumor is growing rapidly and starting to impede on the right optic nerve as well. Therefore, her neurologist and his team have decided the best form of treatment is chemotherapy. This will "hopefully" keep the tumor from spreading to her brain, and in turn save her other eye from losing sight as the damage is done in the left;/
All this being said, this morning (1/15/18) she went to Cook Children's to have a port placed in her chest. Thursday she starts chemotherapy for what will most likely be a weekly treatment over the course of 14 MONTHS!!! It still doesn't feel real to type those words, let alone say them. She will be getting repeat MRI's every three months for the next two years to track the progress and every 6 months of the five years following that.
This being said, she has some wishes considering she may lose her hair: a.) that her peers support and love her regardless, and b.) that she gets a hot pink wig! ;)
I have some requests as well: a.) we need all the prayer warriors we can get and would love to be on your "prayer list" should you have one. Our family, the doctors, and most of all Alyssa, for more reasons than I have time to mention here!!