I've been trying for 3 weeks and 3 days to find the right words to write...but there are none and there never will be. Brylee died on the night of Monday May 19 at 8:47PM, 2 days before her birthday. I miss her so much that my entire body aches. She slowly deteriorated over the past month, every day she would wake up with something else gone. It was horrible watching her slowly die. I woke up at 3AM on the morning of May 19 with her non responsive and breathing really hard. She held on for 17 and a half hours like that and I held her for every minute. Every day I walk through a fog and put a face on for the world. Even though I have 2 other children I feel like the house is so empty without her. I hurt for her so much that my entire body aches. How do you live without living? I've forgotten what normal is. I don't remember what I use to do before cancer struck. I don't remember who my friends were or what I enjoyed. I don't ever want to forget her but yet I'll find myself not thinking about her and I cry from overwhelming guilt. As every new day passes I find it harder and harder to remember the details of her. The exact color of her eyes, the way her hair curled, the sound of her giggle. I hate that I have to look at pictures or watch videos to remember. I hate watching Bryker sob everyday that he misses his Brylee. He listens to her song every day over and over. I feel so lost. I don't know how to help him. Brylee was my world and I will forever miss her.
Today I went and saw The Fault in Our Stars with some amazing friends. I sobbed the entire movie and had flash backs from Brylee's treatment. But I walked away with some new knowledge. Brylee does not need to be remembered by the entire world nor does she need to be loved widely. I love her deeply and will forever remember her, even if it's by pictures. She left a legacy on my heart and that is good enough. I miss my baby more that words can explain.
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.
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!
We have had an amazing month full of creating memories! I just wanted to say thank you to everyone who has made this possible for us. We had a wonderful lady bug release where we let off 4,500 lady bugs. We had a blast in park city just hanging out as a family. We had a lovely lady bug party at the radio station, KUSA. We had a blast in Yellowstone and bear world. We enjoyed an amazing tea party with the Elmo young women. We had the most amazing mascots come and visit us. (Harley even got arrested!). Felix Falcon, Grizzbee, Harley, Willy, And Kodiak came to our house for a visit. They gave Brylee a precious guardian angel. They even took us to Bree's soccer game in a pink hummer! All the mascots were riding on the top of the hummer which resulted in us getting pulled over by 2 price police officers! The officers were so sweet and ended up giving us a police escort to the soccer field. The mascots ended up making every kid smile by playing in all the soccer games and taking pictures with everyone. It was amazing to share this special moment with so many children! We also were apart of the halftime show at the Real Salt Lake soccer game. We then had an amazing fundraiser dinner at Salsa Leedos in Herriman. Once again Felix made Bree's night wonderful! She absolutely loves him! She was giggling uncontrollably as they were playing a high five game! I love seeing her smile like that! When we left all she could say was that she misses Felix. The dinner was an amazing turn out! We were able to raise enough money to go to Disneyland! We are leaving Saturday! We are so excited! I promised Bree I'd take her for her 4th birthday. When we found the tumor progression in August I was devastated that she isn't going to make it to that birthday. But because of the wonderful generosity of family, friends, and complete, amazing strangers I am able to keep that promise to my baby girl! Thank you so much everyone! My heart is full!
Bree has been handling her new chemo protocol surprisingly well. She doesn't get sick anymore like the first week she had this chemo. It makes her really tired but she hasn't thrown up or had diarrhea like the first time. She has been having issues with her left eye again. The eye doctor is having us patch her right eye with the hopes of making her left eye stronger. Bree has to wear the eye patch for 2 hours a day. She has also been having troubles opening our door knobs. The tumor is causing troubles with her muscle coordination. I've been slowly trying to change them all to levers. Thank you for the few that were donated. We've been able to put a lever on the main rooms she uses.
Thank you everyone for your love and support
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.