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.
It's been such a long time since I've posted anything. We've been so busy running every where that I just haven't had time. Brylee is doing wonderful. She's finally back to her bouncy little self. We are starting another round of chemo tomorrow. I'm praying my guts out that she handles it better than last time. I really don't want another hospital stay.
We went on our Make A Wish trip to Disney World at the beginning of July. It was amazing and I wish we could live in that fantasy life 24/7. The kids enjoyed the airplane ride. I was shocked because I was expecting terror and tears the entire 7 hour flight! Give Kids The World did not have room for us so we stayed at the Disney Grand Floridian Resort. It was beautiful and gigantic! Our room had a patio that over looked the lake with a perfect view of Cinderella's castle. We watched the 4th of July fireworks almost every night from our room. The first day we went to the Animal Kingdom. We quickly discovered the kids were too short for most if the rides so we could only do the safari rides. We went and looked at all their animal exhibits and tracked down a lot of characters. The characters was Bree's favorite part. She loved getting their autographs and hugs. At first Bree was really shy and wouldn't let me put her down. But by the time we saw Pocahontas she was golden! I loved our medical make a wish pass. We did not have to stand in a single line. All we had to do was walk down the exit, show our pass, and the employees would put everything on hold and let just us in. The second day we did Magic Kingdom. This park is gigantic and there was no way we could make it all the way thru in one day. We saw almost all the princesses and buzz lightyear. By this day Brylee could not contain her excitement about seeing all the characters. She would run up and give them hugs and kisses. She couldn't keep her hands off them! And they were so loving back. Most of them would just hold her and non stop kiss her chubby little cheeks. I've never seen Bree so happy. She never stopped smiling. The characters would take so much more time with us then the other guests. There were some that were sentimental even though we couldn't see there faces. Minnie Mouse made me cry and Cinderella started tearing up. Cinderella loved the fact that she was Bree's favorite and that we had planted "Cinderella flowers." We stayed in the park for the electrical parade and fireworks on night number 2. Oh how Brylee's eyes lit up at each float! I wish I could have them in my front room everyday!! On day 3 we did Hollywood Studios for a few hours then went back to Magic Kingdom. I swear we saw Minnie Mouse 4 times and everyone else at least twice! That girl could not get enough of her princesses!
On day 4 we went to Sea World. We watched the Shamu show and half the dolphin show. The kids could not handle sitting for that long. We got to feed the dolphins which they totally loved! We walked thru the shark tunnel. Bryker wants one in his bedroom! But the best part was the pearl pool. We got to pick our own oyster and our personal diver would dive down and get it. They would then crack it open and we got to keep whatever pearl was in the oyster. Brylee chose an oyster and when they cracked it open there were twin pearls! The lady said this is very rare and only happens 3% of the time. My husband and I both looked at each other with knowing looks. Brylee is our very special girl with a very rare tumor. There is such a small percentage that she'll survive 4 years. How fitting it is that she picked that rare oyster. Needless to say I got one of those pearls set in a pendant so I can always have her close to my heart on a necklace.
On days number 5 and 6 we went to universal studios. We got to see Dora and Diego the first day (and many others but these two were the favorites). We also got a personal meet and greet with all the super heroes. We were waiting to see Spider-Man when, Charly the entertainment guy, noticed our make a wish badge. He said that he would set up a personal meet and greet just for us. So we went to the place he told us to go and we got to meet Spider-Man, captain America, wolverine, range, storm, and cyclops. It was so much fun! The last day at Universal they set up a special meet and greet with all the Dr. Suess characters. We watched their performance while waiting for the meet and greet. When the Lorax came on stage Brylee almost ran up there! I had to stop her but she was so excited (the Lorax is a favorite)! When we finally got to meet them Brylee would not leave the Lorax's side! We got to meet Thing 1 and Thing 2, the Lorax, the Grinch, the Cat in the Hat, and Sam I Am. It was so much fun.
We then rushed to the airport where Brylee proceeded to cry saying she didn't want to come home. The only way I could convince her to get on the plane was to promise we'd go back. She followed that up with "I want to come back on my 4th birthday Mama. I want to see Lorax and Cinderella." I cried on the plane when I realized we were coming out of Fantasyland and back into reality. I hope that I'll be able to take Brylee back for her birthday. It truly is the happiest place on earth.
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.