Wednesday, March 19, 2014

An Answer To Prayer

Yesterday was a long day. When all was said and done we spent four hours in waiting rooms and four hours in the car! Although it was a long and arduous day we have results that are an answer to prayer.
Emma in her MRI prep room

When comparing December's MRI to yesterday's there seems to be no significant tumor growth. The tumor has changed shape slightly but the over all size is about the same. Emma's neurologist did mention that her good eye has a slightly enlarged optic nerve but it did last time as well. This could possibly translate to her going blind in a couple years or a surgery but for now let's not project.

Looking down, tumor on the left eye
The fact that it has not grown at a time when the rest of her body had a significant growth spurt is an answer to prayer. We know before now it has been growing. This certainly gives us hope! The next stop is the NF1 Genetics specialist on April 11th. She will be able to give us more information on what to expect going forward.

Thursday, March 13, 2014

And Back For More

Round Two

The signs were so subtle that it took four days for even me to notice that although the sun is shinning in our country town I've been hiding inside. Food is tasteless and from nowhere I feel suddenly all the blood fall out of my head sending me into a dizzy blur. I'm not ready to go back to the hospital, not eager for more MRIs and bills (oh the bills...) not excited about watching my baby girl be stuck with needles again. Oh let me go back to February when we were simply a toddler girl playing and a
Mama holding her hand.

I wonder if I am strong enough. Can I get through the next week with out a panic attack? Can I endure this along with other life stresses?

I have to admit, I'm frightened. Its hard not to play the "what if" game. What if the tumor is growing? What if there is a complication with being put under? What if I fall apart in front of the doctors?

I know this post is dark but I don't want to apologize for that or delete it after I'm done writing. Emma needs to know, I want her to understand none of this was taken lightly. I am not looking for everyone to pity me but it would be lovely to please add a special prayer for me that I can be strong. I'm feeling pretty dark which feels odd since this week has been the most beautiful weather we have seen in a long time.

So that being said here are the logistics, Emma goes in for her second MRI on Tuesday morning. After the test we have follow up appointments with the pediatric neurologist and genetics specialist team. Depending on the results we will chose a treatment path.