Sorry I haven't been updating. There's a part of me that thought if I didn't put it on paper it wasn't real. We had an amazing time doing our bucket list. The Deseret News even followed us for months and published a story about our journey on Thanksgiving morning. We had a blast at Disneyland and her prom was amazing. I cried the entire time she danced with Cory. In November we got the worst news ever on her MRI. Her tumor grew significantly. The original size was 5.8cm x 4.6cm x 4.6cm (roughly the size of a tennis ball). In May it shrank to 3cm x 2.2cm x 2.2cm. As of November her MRI showed significant growth. It's almost the original size again measuring at 5.4cm x 3.6cm x 3.6cm. We were completely devastated. We started her on a new chemo called etoposide. This chemo dies not kill the tumor or stop it's growth. It slows the growth of the tumor. So if with no medication her tumor would last about a month or two. With the etoposide we get about 3-4 months. We decided to live everyday like it was her last more so than what we already do. We got her a pony for Christmas! Mini Vinnie was donated by an amazing family! He is technically still theirs but Santa brought him to our house Christmas Eve and Bree got to ride him. We get to go visit him whenever we want.
After Christmas Bree started acting like she did the summer of 2012 before she was diagnosed. She was miserable and constantly sobbing or angry. She even locked herself in Bryker's bedroom for 3 hours one day. I called her doctor and discussed what was going on. I told her dr that it was 1,000 times worse than roid rage. She had us come stay at the hospital for 4 days for observation. Cory and I thought for sure the tumor was growing and we were ready to tell Dr. Bruggers that we were done doing treatments. We were planning on putting Bree on hospice and loving her for her last week. Part of the hospital stay required an MRI. The MRI was shocking and amazing! Even the doctors were shocked. Bree's tumor was stable. It hasn't grown since November. Etoposide wasn't supposed to stop the growth. And with her tumor being as large as it is usually doesn't respond to anything at this stage. We are still relieved over it. We are still doing the etoposide treatments which is an oral at home chemo. She takes it for 21 days in a row than has a 7 day break where we check her counts and do a follow up. The hospital stay diagnosed her with a psychiatric issue called delirium. They put her on a new medication for it and she is back to my happy Bree!
The MRI this month was an answer to a priesthood blessing she got from Elder Zwick of the Quorum of the 70 of our church, The Church of Jesus Christ of Latter Day Saints back in October. In the blessing he said that her tumor would shrink and her life would be extended. I'll be honest my faith was rattled in November when her tumor had grown. It is amazing how our Heavenly Father never abandons us. Even when I was livid at him in November he still had his arms wrapped around me. Through this entire journey he has never abandoned us.
Just a reminder about what Brylee in 5 means. The statistics for DIPG (Bree's tumor) are 95% die within 11 months after diagnosis. The last 5% die within 4 years. February 6, 2014 will be 11 months since she's been diagnosed. So when she wakes up on February 7th she'll be in the 5%! To celebrate she wants to go to build a bear. She loves that store! So we are taking her! I'm so excited I can't even stand it!
Thank you everyone who has been so generous with your time, money and energy to make Bree's past 6 months so memorable! I don't know who all of you are but I thank you with every ounce of my heart!
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.