These past few months have been pretty boring. But this past week has been extremely emotional and trying. It started with Brylee's friend Mariah passed away on Monday April 7. Mariah had the same tumor as Brylee. They've become really close friends as we've done play dates. I remember in January having a feeling and telling Cory that Mariah would go first, than Brylee, and than their other little friend Rae. The next day on Tuesday I noticed that Brylee started dragging her left foot when she walked. It was then that I realized that her tumor most likely had grown. I started packing and doing laundry preparing to spend the weekend up north so we could go to Mariah's services. Friday morning at 2am Brylee woke up with croup. I took her into our local ER and they gave her a breathing treatment. This seemed to fix her and she was fine all afternoon on Friday. We finished packing for our weekend and loaded up the car. We stopped at the store to pick up one of Brylee's medications. When Cory got back in the car he noticed a lady bug on the window. He rolled down the window and brought it into the car. Brylee and I played with it and than let it fly away. Looking back on it a few days later I am convinced that it was Mariah telling Brylee to come home. Mariah, Brylee and Rae (another little girl that is Brylee's friend with the same tumor) all love lady bugs. Immediately after letting the lady bug go Brylee fell asleep. About an hour and a half later, when we reached Sandy, Brylee woke up screaming that her head hurt. We decided to take her to the instacare and get her assessed. When I pulled her out of her car seat she was limp bad her lips were white. When the nurse finally called us back we discovered Brylee had a fever of 103.5 and was struggling to breath. The nurse ran to get the doctor. When they hooked her up to the oxometer to see what her oxygen levels were she wasn't above a 60. Normal people are 95-100. The doctor looked at me and said she needs to be on oxygen and transported to the ER. She told me she was going to call the ambulance. I argued with her saying my husband was in the parking lot and we could just drive her up to primary children's. The doctor looked at me and asked if I had missed the part where Brylee needed to be on oxygen. I agreed to have the ambulance called. By the time the ambulance arrived Brylee was in respiratory failure. They flew up foothill drive going 80 miles per hour with Brylee on 15 liters of oxygen and still not above a 70. When we got to the ER they did every emergency respiratory proceeded till they finally had to intubate her and put her on a ventilator. To accomplish this they had to paralyze and sedate her. I was composed until one of the ER nurses rubbed my shoulder and asked me how I was doing. The waterfall of tears that followed did not stop. When they finally had Brylee breathing again (by machine) they did a chest X-ray and found possible pneumonia. They also did a CBC and ANC and found that Brylee was neutropenic (no immune system). Later that night we were transferred from the ER to the PICU where they continuously kept her sedated. Saturday morning we missed all of Mariah's funeral services. I cried all morning long. Later that afternoon they ran some tests on Brylee to see if she had a virus or other infection. They found a UTI that they think had been untreated for several weeks. The UTI plus pneumonia plus the neutropenia caused her body to go into septic shock resulting in respiratory failure. They immediately started her on antibiotics. On Sunday she had an allergic reaction to one of the antibiotics. On Monday they did an MRI to see what her tumor was doing. That night they told me there was tumor progression. Tuesday was when we found out what that meant. Her tumor has significantly grown much larger and is back to its original size when she was diagnosed 13 months ago. We talked with Dr. Bruggers about what our options were. Since we had already done every treatment possible over the 13 months there is nothing else they can do. Cory and I had to make the hardest decision in our lives. We decided that it would be best to put Brylee on hospice and to let her go. Later Tuesday afternoon they extubated Brylee and took her off the ventilator. Later that night that released us from PICU and sent us upstairs to the cancer wing. On Wednesday she was having signs of possible brain swelling so the doctors ordered a CT Scan. The CT Scan was clear. Thursday morning the jazz bear came to visit her. It was the first smile I've seen since Friday. They played catch and played for a bit. Later Thursday night we had the most amazing experience. Elder Zwick, from the quorum of the 70, stopped by to visit. He gave Brylee a blessing saying that she will go peacefully and without pain. And that her last days here will be comfortable. He said that she will have great influences in our lives. He also said that she will be resurrected with a perfect body. After the blessing I felt great comfort. I have this overwhelming feeling that she only has days with us. Not weeks or months but days. I know that it is her time to go and I know she will be much better off in gods presence. I'm not thrilled about being left behind but I know her time is up. I'm finally ready to let go.
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.