Thursday, January 30, 2014

Trust Your Gut

The world should stop but it doesn't. It doesn't seem fair that bills keep coming, food empties from the fridge and people demand things from you during a tragedy. Life should stop. You should have time to lick your wounds and spend time reorganizing what is left of your life. But alas, there is no rest for the weary. Anyone who has dealt with severe illness or a death in the family knows what I'm talking about. So we march onward.

Today we met with a genetics specialist who has a background in NF. She said we were correct not to jump into chemo. Just like I read in my own research she said chemo only pauses the tumor growth in 50% of patients. The typical NF tumor will stabilize and shrink on its own. Chemo has a laundry list of horrible side effects, some are permanent. So it is not to be taken lightly.

She wants us to get a VEP done every 3 months and another MRI in March so we can compare results over a period of time. While we wait she is researching other treatment options. For the first time I really feel like we found someone who is educated in NF, level headed and empathetic. I'm happy God sent her to us!

So the plan is more tests, compare results, research treatment options and pray Emma keeps her
Let's go Mama! 
eyesight. For now chemo is off the table and thank God for that!

A huge thank you to our amazing church, St. Peter's, who has been supporting us through prayer and aid. We are forever grateful for all of you! I also want to send out a huge thank you to all the wonderful mothers who have been there for us, you make day to day life possible!

Next stop is a VEP test. And the world spins madly on...

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