Why Chemotherapy?

Sometimes people with Neurofibromatosis go through chemotherapy.  When a tumor becomes large enough to affect surrounding areas, chemo is used to shrink the tumor.

I know when I told my family and friends that my daughter was beginning 52 weeks of chemo, I got an overwhelming reaction.  "Ohh My we are so sorry".

Generally people relate Chemo...to Cancer...and while Neurofibromatosis is not cancer, it can be as, if not more serious than it.  While cancer generally affects one area at a time, NF is widespread, affecting all areas of the body all at once.

I am in no way downsizing the seriousness of cancer, just trying to help people better understand the NF world.

My daughter Bailey, is 15 yrs old and was diagnosed with an Acoustic Neuroma (this type of tumor is more recognized with NF2-a similar disorder) Thus making Bailey's NF1 case unusual and rare.

This diagnosis required MRI's every 3 months....to monitor the growth of this tumor.  Initially, doctors wanted to slice into her, to remove the tumor...but 2nd and 3rd opinions, showed this option would severely disable my daughter.

A current MRI scan showed growth of the Acoustic Neuroma...but also showed another tumor growing on the Corpus Callosum part of her brain.  This finding sent her into a "high risk" catagory and chemotherapy was ordered.

Her drs. were  hoping that the typical Carboplatin would work to shrink Bailey's tumors....but in fact her tumors grew, despite being on weekly chemo.

A switch to Vinblastine, and major side affects from it, has doctors wondering what to do next.

We are blogging our way through this journey...and hope that you will learn something and see how even through life throws you stones, it is all up to YOU, as to what you do with those stones.

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UPDATE!....

Today March 3, 2012 Bailey is having surgery to remove the port the doctors put in one year ago.  While I hesitate to say chemo didn't work, the doctors have decided to stop the Vinblastine and switch to a different kind of chemo.
Tomorrow, Bailey will start a new ORAL chemo, in hopes to shrink her brain tumor.  We are hesitantly hopeful about this new 8 month course of treatment....And still of course plan to THRIVE with anything that comes our way.

Sept 27, 2012

6 months into oral chemo and Bailey's tumor has decided to change shape.  It went from being a peanut m&m size ROUND shape...to an oval shape...but  measuring almost exactly the same size.  Not sure how to feel about this.

Cholesterol levels are way high...Still keeping an eye on things.

Dizziness has been the main complaint-