Friday, May 3, 2013

Brain Tumors!

May is not only Neurofibromatosis Awareness Month...It is also Brain Tumor Awareness Month...And LUCKY US....We have BOTH!  (sarcasm intended)

Tumors can happen to anyone.  But tumors with NF are - unfortunately, a BIG part of life.

The tumors you see above affect my oldest daughter.  The top picture shows an Astrocytoma.  A benign - slow growing tumor that is in a very dangerous spot. 

Bailey began chemotherapy, just a few days after this tumor was discovered.  The news blew me away.  The MRI we had, was for the Acoustic Neuroma...and the last thing I thought we would hear, was that we had a NEW tumor to worry about.

Bailey went through TWO Years of chemo, to try an shrink, or at least maintain these tumors....
and although Bailey has been considered "stable" for the last 6 months...Both tumors are larger, than when we began treatment.

We have decided to take a break from chemo...and give Bailey's body some time to recover....

Next Week...We get to check in on these tumors, with our 'every-3month-MRI'

For Now...We live for TODAY.  Hope for TOMORROW 
and as always....

1 comment:

  1. I have NF1, I am 32, and was kept in the dark about my condition till I was about 21-22. I was told that they were flesh moles for the first 2/3 of my life. While I am thankful that I do not have any of those large tumors that hang from a person's trunk like squash, I feel it is unfair for my family to expect me to just get over it. If my mother or father had educated and prepared me for the life ahead, fine, but only though my own observation and later research did I notice the number of tumors on my torso and arms increasing. Despite my best efforts I have been perpetually single all my life. Maybe one day I will meet a woman who can see past this. Should I tell my family to stuff it, because they have no concept of the ostracization I have endured and still endure? The random looks and missed job opportunities are the worst. Sometimes I feel like I am paying for somebody else's sins as I am the only person in my family with the disease. Happy NF/Brain Tumor Month by the way, this blog is somewhat inspirational.