Thursday, June 23, 2011

MRI Results

We didn't get the news we wanted to hear.  The entire visit yesterday, was overwhelming...If I could have just hid under my covers and avoided this day, I would have.

In August 2010, the tumor that we have been treating with chemotherapy for the last 3 months, wasn't even there.  In February, it was the size of an M & M, and now yesterday's MRI showed even more growth.

Bailey has been asymptomatic with BOTH of the brain tumors she has, which surprises her doctors.

I kept thinking yesterday, that if I didn't fight so hard for insurance to approve the first MRI, which kept getting denied because insurance and doctors didn't feel a baseline MRI was important enough, we would never have known that these tumors exist.

The treatment that we have been doing will be changed.  The "baby chemo" Bailey has been taking for the last 3 months, will be bumped up to something more aggressive.  A biopsy will be scheduled to see what kind of tumor this is, which will determine the type of chemo they choose.

We will continue to fight our battle.  We will continue to push for the care that we feel we deserve....And most of all, we will continue to THRIVE ON!


  1. your family is in my prayers,Bailey is a strong young lady she will beat this.Big hugs for you all.

  2. Your blog is amazingly inspirational. As a father of a newly diagnosed child...I have searched the internet for information about neurofibromatosis, only to become extremely disheartened....that is until I stumbled upon your website and blog.
    Keep up the fight, and know you are making a difference!

  3. kristi I am so so sorry I wish I could say more the tears a streaming down my cheeks. Wish I could do more to help you. Wished you lived in the UK. You wouldn't have to worry about insurance

  4. So sorry to hear the news. Praying for y'all and continued strength.


  5. We are praying for you, Bailey. You are an amazing, brave and resilient girl.

  6. I am happy that your daughter has you fighting for her. God put you on this Earth to stand up for all those fighting to be heard. You inspire so many people living with Neurofibromatosis, Kristy. I for one have learned a lot from you, and the stories you share with the world.
    The world would not be the same without you! I think there should be a Kristy fan club, bcause you are amazing. May God bless you and yoru family!