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!
Much love,
The Olsons'
You truly are never forgotten & you will be forever blessed. Love knows no bounds. I'm grateful to see His hand in your lives. It strengthens my testimony & I'm grateful you're so willing to share. Much love to you all!
I just came across your story and my heart goes out to you and your family. You have one brave little girl. Sadly, I am familiar with DIPG, I have a friend with a son who has DIPG. It's not an easy path you walk. But you do it bravely and beautifully as a family.
I just came across your story also through a crochet pattern site of a friend of yours. In January we just lost our adopted grandson from DIPG so we are familiar with it too. I was just thinking about how much I miss him and God brought me here for some reason. I just want you to know that I will be lifting your beautiful little girl up in prayer and keep praying for a miracle for her and your family.
I lost a wonderful wife to cancer some years ago. The loss devastated me. Though I haven't an inkling what it feels like to to have faced such a horrible struggle only to lose such a small, beautiful, and courageous daughter. I haven't any money to contribute as I'm 73 now, and living on Social Security, but I can pray for all of you and encourage you to honor your daughter's memory by continuing to fight for awareness, and against this horrible condition. It's very small consolation, but who knows-your daughter's life and death might very well inspire a cure for the illness that took her from you. By the way, it's only natural for you to feel anger for the ripping pain of loss you've experienced.
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.
Thank you for sharing <3
ReplyDeleteFrom one of the many who follow your story, may god continue to bless you and your family. Praying for a miracle.
ReplyDeleteShe is a little miracle! So thankful she is doing well. She is in my prayers.
ReplyDeleteYou truly are never forgotten & you will be forever blessed. Love knows no bounds. I'm grateful to see His hand in your lives. It strengthens my testimony & I'm grateful you're so willing to share. Much love to you all!
ReplyDeleteI just came across your story and my heart goes out to you and your family. You have one brave little girl. Sadly, I am familiar with DIPG, I have a friend with a son who has DIPG. It's not an easy path you walk. But you do it bravely and beautifully as a family.
ReplyDeleteI just came across your story also through a crochet pattern site of a friend of yours. In January we just lost our adopted grandson from DIPG so we are familiar with it too. I was just thinking about how much I miss him and God brought me here for some reason. I just want you to know that I will be lifting your beautiful little girl up in prayer and keep praying for a miracle for her and your family.
ReplyDeleteDear folks,
ReplyDeleteI lost a wonderful wife to cancer some years ago. The loss devastated me. Though I haven't an inkling what it feels like to to have faced such a horrible struggle only to lose such a small, beautiful, and courageous daughter. I haven't any money to contribute as I'm 73 now, and living on Social Security, but I can pray for all of you and encourage you to honor your daughter's memory by continuing to fight for awareness, and against this horrible condition. It's very small consolation, but who knows-your daughter's life and death might very well inspire a cure for the illness that took her from you. By the way, it's only natural for you to feel anger for the ripping pain of loss you've experienced.