I'm angry. I absolutely HATE Neurofibromatosis. Today the only good thing that came our way, was all the love and support we got while we were waiting and after we got the results from today's MRI.
Neurofibromatosis...How DARE YOU! While you have made me stronger...Your constant beatings are exhausting. NF...You are nothing but a thief!
Seeing the doctor every 3 months is weird for us....It sorta makes me feel like we are less of a priority now, but in fact Bailey's tumors are HIGH risk for causing major issues. The fact that she hasn't had any of those major issues, doesn't make me worry any less.
Today was our 'every 3 month' MRI...To check on Bailey's brain tumors. We also had a fasting blood draw, to check on what the new chemo is doing to Bailey's body.
The days that led up to today had my mind whirling. The "what ifs" have driven me (and I'm sure Bailey) crazy...But we tried to stay as positive as we could.....
I was in the waiting room...The possible outcomes of the MRI running through my head. I sent up many MANY prayers, knowing that our family is just plain tired of all this chemo stuff.
"We are so ready for some GOOD news Lord!" was my silent prayer.
But the news wasn't good.
Dr. Rush showed us the MRI scan from December....And compared it to the one from today. The word NO TUMOR patient wants to hear.....GROWTH.
My heart dropped to the floor.
The light in the room flickered...and I had to have Dr. Rush repeat what she just told us.
She told us that we would continue with the same course of treatment...But if this tumor shows growth in the next 3 month scan, we will HAVE to take action......Dr. Rush puts her hand on my shoulder and looks me straight in the eye...."We aren't there yet...Ok?"
But this didn't make me feel any better.
I looked over at Bailey, who had her head down and was playing with her ipod....I am SURE she didn't quite understand what was just told to us. The full meaning of today didn't come until we were in the car leaving the hospital.
"My tumor grew?" Bailey asked me.
"Yes, honey." I replied.
"The one that can kill me?" Bailey continued inquiring
"The 'important' one, yes." I told her.
Silence filled the car and was almost deafening.
I throw my hands up. Not in a 'giving up' sense though. I throw my hands up to the Lord. I ask HIM to take this from us and DO something with it. Change it. Make it disappear. Have it help someone else....SOMETHING!
I realize the only control we have in this, is how much FAITH we have...And how we use that FAITH to make a difference.
We will continue to BELIEVE--TRUST--and THRIVE
because that's just how we roll!