We have had two really long days. I was going to write a post last night but I fell asleep before I was able to get on the computer. Tuesday was truly an amazing day! Brylee was visited by three amazing women, Miss Utah,
Snow White, and Cinderella. These women were willing to take time out of their day to come meet my amazing little girl. Brylee was super shy while they were here. She was excited when I told her they were coming but then when confronted with them she was nervous. She even fell asleep while Miss Utah was here hahaha. But Miss Utah was understanding and very patient with my little Brylee. Snow White and Cinderella brought her presents and were very patient as well. Brylee's favorite present was a pair of princess pajamas that they brought her. She changed into them the second the beautiful princesses left. Even though she was shy and sleepy, she didn't stop smirking the rest of the night after the three of them left. Thank you so much girls for taking time to come visit my princess.
Today we had our first clinic visit after radiation. Her blood counts were great! Her immune system hasn't crashed yet which is good. They said that when her blood counts get too low they will have to do a blood transfusion before they can continue radiation. I hope we never get to that point. The part I don't understand though is that they added a whole extra 7 days to her radiation schedule today. Does that mean that they are not seeing the results they want? Or does that mean that they forgot to put us on the schedule earlier? I have no idea and trying to get straight answers out of her doctors is like pulling finger nails out with pliers. I feel like I never get a straight answer from anyone!! So frustrated!
I just want to say a universal thank you to everyone who has been so willing to give so much of their time to and for Brylee. We truly are a very blessed family and we appreciate everyone in our lives. I've been trying to send out thank you cards and I can not keep up with the generosity! So if I, for whatever reason, forget to write you a card know that I really do appreciate you. We've been so overwhelmed with loving, caring friends and family. Thank you so much everyone! If you want to help out but don't know how make sure you email at firstname.lastname@example.org! Love you all!
Brylee Olson was diagnosed with a DIPG, an inoperable brain tumor (infiltrating brain stem glioma) on Wednesday, March 6, 2013. This is a blog for her and her fight to be in the 5% who survive 3-4 years. Or the rare chance of complete survival.