PRAISE GOD!!! PRAISE GOD!!! Savannah's B-RAF Mutation Test came back positive!!! Even though any kind of mutation sounds scary to me, the doctors say it's a good thing. Apparently, if her cells are mutated, there is a drug (that has just been FDA approved last week) they can prescribe that can go into the mutant cells and attack them to eat up the cancer.....or.......something like that. You know me and scientific talk... :) Anyway, they say it has a high success rate so--that is our specific prayer now...that the drug works on her. She has other tumors in different areas besides her adrenal gland and liver but the doctors don't seem to be that concerned. I guess if the medicine works - it will work on all the tumors wherever they are. They finally put her on a steroid- type drug to calm her nausea and give her an appetite. It seems to be working. She is starting to eat a little bit and doesn't seem nearly as weak. She's not 100% yet but she's working on it.
There were a few dark days while we were there. Savannah was SO sick... then, we learned that the IL 15 Treatment was not working. At that point they pretty much told me there was nothing else NIH could do for her because there were no other clinical trials that she qualified for. Our Doctor said he wouldn't just leave us hanging though, and was researching other options at different hospitals etc....It was like a bad roller coaster ride....up, down and all around.
That night, I went to my room, exhausted, and fell asleep crying and praying. Everything looked so dim. Through the night God sent His spirit to comfort and console me. When I woke up It was almost like an audible voice that said "Get UP!!! It's a beautiful day!!! Why are you down? I told you from the very beginning I would take care of this and nothing has changed. I've got it under control!....TRUST ME!!!" SO...what else could I do?....I got up with a renewed spirit and had a great day with Savannah. She had a good day too! :)
Now, we are just waiting for all the paper work to be done and they will be sending us her drug. I haven't even read the info on it yet. I'm hoping side effects are mild and that she will tolerate it well.
We are asking for your continued prayers for total healing. Thanks SO much!!!!