Day 1 of Hope

I just spent 15 minutes typing an update and the computer lost the connection...gotta love wireless! In a nutshell, arriving and registering was utterly exhausting, but we are starting to get used to the surroundings. There is NO snow in Memphis, the sun was shining and it was close to 70.

We met with the doctor and he assessed Sophie, confirming without looking at the MRI or doing one of his own that she certainly was presenting the "normal" symptoms of a brainstem glioma. Bummer...we were hoping Cleveland was wrong! He gave us the rundown on the "protocol" and said radiation would probably start early next week. He was a kind man, but it was disheartening to hear him say, that they would like permission to have a first look at the autopsy for research reasons...we hope that autopsy doesn't have to be performed!

We are a little worried about Sophie. She progressively got more "wobbly" as the day went on and was extra clingy to Mommy, which is difficult for everyone She ate two huge plates of spaghetti at dinner (the steroid causes increased hunger) and then came up to get a tub and threw up her dinner of noddles, applesauce and cucumbers. It's painful for us to watch her...she had long noodles coming out of her nose, and she tells us, "don't look at me!"

We have a very busy day planned for tomorrow starting at 6:00am for a PET scan. Sophie won't be able to eat after 10:30pm, and I know that will be rough. We will have to be creative in finding ways to distract her.

I would type more, but now is my chance to research the different clinical studies available while Sophie sleeps. I'm hoping to be able to give another update tomorrow. Thank you again for all the kind thoughts, words and prayers. Many people want to donate money and we certainly appreciate your kindness. My sister is working with the bank and will be getting that info on here soon.

To end on a good note, Sophie met her first friend Jessie at dinner and they colored together. Actually Sophie picked the colors and Jessie drew the lines. Jessie is 7 and was so kind to Sophie, who isn't very confident in her coloring now that she can't stay in the lines, due to the weakness in her right arm. The people are nice here, although it's hard to ignore the reasons why they are here. Say an extra prayer so that we have the strength to take one day at a time.