Why I am doing this/ the long journey we are about to embark on!

Last week my DD had her every three month MRI. When our NSG who we refer to as Dr Benny walked in the room you could just tell he didn't have good news for us. You see our DD Em has a genetic disorder called NF1 and has multiple brain tumors from it, we have been dealing with them for 2 years. She did a year of chemo and has been off it for 6 months....I bet you know where this is going...Sure enough the tumors grew and she needs to restart Chemo. We will be doing a chemo protocol that includes 52 weeks of Vinblastine. I update health issues on her care page (maybe some here...)this blog is set up to help us remember the funny things she says or does during our drive to Madison weekly in the car....because as we have learned living with Emma she will always say or do things to make us shake our heads and will somehow help us all summon the strength from with in us to survive this journey again.

So the funniest thing that happened our first week as we are discussing starting chemo with the NSG was the point that Emma said "I am really sick of that Barack Obama giving me head aches!" Now Jim and I NEVER discuss politics--really are quite middle of the road people if we did, NO CLUE where she came up with that! Jim says "I think we all know where she stands on health care reform!" Turns out she was talking about her head ache medicine Neurotin and it isn't working well...

She has been quiet sad the past few days about having to restart chemo, unfortunately she ended up with some mouth sores from it this past week...so she hasn't been to witty but we all know it is still there so I hope to keep you all very entertained as I so know we will be!