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
It's been a crazy busy week. We finally started Bree's new chemo protocol. We had her irinotecan on Wednesday. This one attacks the cancer cells in a different way than the temodar did. Hopefully it'll be more effective than the temodar. We didn't start the avastin till Friday because it was taking forever to get approved by our insurance. The avastin costs more than our house and this one attacks the capillaries. Hopefully it'll starve the tumor by killing its source of nutrition, her capillaries.
Cory and I put together a bucket list of things to do with Brylee. We created this list with the hopes that it would distract us from the horrible news that her tumor is growing and at the same time create unforgettable memories of our little girl. We put some outrageous things on there as well as easy to accomplish things. Everything from making handprints to riding in a hit air balloon. We are feeling extremely blessed and thankful to the Children and the Earth foundation and our friend Sara who have been promoting Bree's bucket list. We have a date for almost everything on the list. They've all been paid for or donated by loved ones and complete strangers! We couldn't ask for a better way to spend our last moments with our daughter. Thank you so much everyone!
If you'd like to make a donation to the bucket list you can send it to:
Children and the Earth
C/O Olson family
252 W Cottage Ave
Sandy, UT 84070
Bree's bucket list:
Meet president monson
Build a Bear
Cheer at a BYU football game
Go to the beach
Go to Disneyland
Lady bug release in her flower bed (done)
Thanksgiving point (done)
Cheer at a U of U football game (done)
Feed the elephants (done)
Go sledding (done)
Princess ball/prom (done)
Ride the polar express (done)
Ride in a hot air balloon (done)
Ride a horse (done)
Go to the circus (done)
Go to Yellowstone/bear world (done)
Disney on ice (done)
Tea party (done)
Hand print in cement (done)
Wednesday August 21 we got devastating news. Bree had an MRI and it showed that her tumor has grown about a half inch. Her doctor told us that we are taking her off the temodar and going to put her on a combination of meds, avastin and irinotecan. Avastin attacks the growth of new blood vessels. We are doing this in hopes that it starves the tumor. Avastin costs more than my house! Irinotecan is a strong chemo than temodar. It attacks the cancer cells differently than temodar. I was so in shock with the news that I didn't catch how it attacks differently. We are waiting on insurance to approve these meds before we start them. If these meds don't work there is nothing else we can do treatment wise. The doctor doesn't think she'll make it to Christmas.
I've done nothing but cry and throw up since Wednesday. She is doing so well with no symptoms. I thought for sure the tumor was stable. I was caught so off guard. I have no words to express my emotions. I feel like I've already lost her a thousand times and now I get to watch her deteriorate and slowly die. A 3 year old should not have to go thru this. I have no words.
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.