Geez what a day!! It was great and long. It started at 6 this morning with getting up, getting dressed, and Brylee crying that she wanted chocolate. Out the door by 7 for radiation. More crying from Brylee about not wanting to go to the doctors. When they brought her back to us she didn't fight today. She was actually very nice and peaceful (maybe it was the m&m's I was sneaking her! lol). On the way home I sat in the back of the car and gave her m&m after m&m. It's amazing how much she smiles when there is chocolate involved!! A girl after my own heart. When we got home I went to give her all her meds and start her feeds through her feeding tube. Well it was clogged!! We tried for over an hour to unclog the stupid thing. I ended up giving her the meds through her mouth and calling the clinic at Primary Childrens. They told me to bring her in. I took her in and they did our entire clinic visit. They drew labs and refilled meds and talked to me. I then had to take her downstairs to the radiation people to get the NJ feeding tube replaced. They had to strap her down to a papoose board and shoved that sucker in her little nostril. Oh the screaming!!! She has a miserable life. I do not envy her at all. She's my super hero. When they were all done placing the tube I got to take her home. We finally left Primarys at 4PM. I then dropped her off with my husband and I went and took a test up on campus. When I got back I got to see her grinning again when I walked into the room. I love that smile and I'm so excited that it is coming back! Also, Make A Wish called me today so we're going to start planning her wish! Super excited! Although today was exhausting we had a very good day. Smiling from ear to ear.
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.