I called the on call doctor today. Brylee has been having nose bleeds all week. It's almost like a leaky faucet. It's not gushing blood out like it did on Sunday but almost like a slow leak. The on call doctor said she doesn't think it is her platelet count, which is good. She thinks that due to the radiation Brylee has developed sores in her nose. She explained that sometimes kids will get sores in their mouths and nose. If the bleeding gets worse we need to take her to the ER. Today was really hard slightly from that news but also because of Brylee herself. She's been rotten today and just down right mean. She full on yelled all through conference that she didn't want to watch this stupid show and that she wanted to watch her show! It was really hard to pay attention and hear anything. So no spiritual uplift today and I was really looking forward to it. My life needs all the spiritual uplifting it can get right now. I've been trying really hard to be optimistic but I just can't be today. I've been noticing somethings that have me worried and scared. Last week I remember noticing that Brylee could close her eyes all the way while she slept and that her drooling had stopped. I noticed that she could smile completely and raise her eyebrows and many other happy things. Today I noticed that her eyes don't close all the way anymore and that she started drooling again. I'm worried that the tumor has started to fight the radiation and chemo and has started to progress again. The awful part is that the doctors aren't doing another MRI until June. Radiation is suppose to be effective for four weeks after the last treatment. Our last treatment is April 19th. Put the four weeks after that will land us right around Brylee's 3rd birthday for her next MRI. I was reading this blog about a little girl that has Brylee's exact same tumor. She passed away in 2009. She fought her tumor for around 16 months. Just reading that mom's emotions and pain brought tears to my eyes. That mom finally let go of her little girl, who was 6, when that little girl said mom I don't want to do this anymore. They stopped treatments and just took her home. I don't know if I can do this that long. And I don't know if I'll be ready to ever make that decision to just stop. I'm so heart broken right now. Every story I have read has come to that end. The decision to stop treatment has always been the final act. Then you just have to take them home and watch them deteriorate before your eyes. I don't want to do this. I don't want this to be my trial and pain. I can't do this.
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.