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.
I had an amazing visit with two inspiring women today. Cindy Hansen and Tiffany Huish are DIPG mom's that have both lost precious little ones to this horrendous disease. Even though it was the first time I've ever met these ladies I felt like I have known them my entire life. We had a very blunt, eye opening, 3 hour conversation. It was exhilarating to hear that others have experienced every single emotion I am currently having. I realized, that for our experience, I am completely normal. It is normal to feel like I'm going to lose it every second if every day. It is normal to cry over anything and everything. It's normal to shove my face with food every second. And it's also normal to not even be hungry. It's normal that I need help and don't know what I need at the same time. I learned that its going to get harder but yet I'll make it. One day I'll be able to move on. But I also learned that until that day comes I need to drop my pride and ask for help. So those of you that live close to me be expecting a cry for help soon. I'm sick of my house looking like a hoarder's house and I'm sick of eating fast food every night because I don't have time to cook. So here it is...I need help! I can't do this by myself anymore. I can't find the time nor will I for a very long time.
Bree is doing very well today. I feel like I have my chatter box back. If it wasn't for the constant meds and that cute bald head I would think this had all been a terrible nightmare. She's definitely feeling better. However, her bilirubin levels are high so the doctors seemed a little concerned about that. We are currently watching it and doing labs on Thursday. We also are continuing to watch her blood counts and platelets. They are still really low which has caused us to postpone her next round of chemo. We are doing a CBC and ANC on Thursday as well to check those counts. Also on Thursday we are doing labs to check the rest of her pituitary and hypothalamus function. I really hope they don't find anything else wrong.
Anyways, I learned a lot today. I am feeling completely normal feelings and I can't do this alone. As much as I want to be that strong, independent person I can't. This is much bigger than just me.
I've been really struggling lately. I want to put on a brave face for the entire world. It's so hard to live up to the expectation that everyone has of me. I always get the you're so strong, you're inspiring, you're so positive, and you're amazing. I have no idea why everyone sees that in me. Because reality I'm a freakin wreck! Every time I turn around there is something else wrong with my sweet Bree. What was the point of stupid radiation if all we do is live at the stupid hospital!? We were suppose to have upwards of 6 months symptom free. Well it's symptom free but it's defiantly not quality time! We are constantly at the hospital with complications. And I've been told a million times over that her chemo ,Temodar, is a very mild chemo. It's not suppose to cause hair loss or fevers or ect ect...well all her hair fell out this week!! I was so not prepared for that because at least 10 of her doctors told me it wouldn't fall out. Sunday morning when I pulled on her hair elastic to take it out to comb her hair the entire pony tail crumbled off into my hand. Literally I threw up in our hospital room because it was so unexpected. Then I cried for an hour as I combed her hair and watched those perfect ringlets fall to the floor...
I'm so full of anger and sadness. I have no patience with Bryker or Byrklee because I'm so uptight. I try so hard to be positive and see the good things that are happening. But it's do hard to always feel like that. I'm human...not superwoman. I'm dying inside.
I wrote this last week while we were in the hospital but I couldn't get it to post from my cell phone.
It seems like every day my showers get longer and longer. I use to be in and out in under 10 minutes but now it seems like I can't get under 30. This has turned into my crying time. There are some days I don't even get in the shower for fear of letting that first tear fall and not being able to stop. I cry so many different types of tears. I cry angry and sad tears because we can't seem to catch a break. I cry self pity tears because why does this have to happen to me? I cry happy tears because of all the generosity of people. I cry humbled tears because, as much as I yell at God, I know Heavenly Father has not abandoned me or my family. I see his hands and grace in my life everyday. As I'm crying I try desperately to regain my bravery to face the world again before the water runs cold. I hate crying in front of people because then I get the never ending questions. When people ask how we're doing I don't know how to answer. Do I bare my soul to them and break down? Or do I lie and say we're great? Do they really want to long, horrible answer? Or are they just trying to show they're thinking of us?
This week has been awful! Brylee started having a really high fever of almost a 103. I took her to the local ER. The nurses and doctors had no idea what a DIPG was so I bawled in the ER explaining it to them so she could get the best possible care. At one point I even had to go home and get a port needle so they could access her because they didn't have one at the hospital.
Monday her fever got even higher at 103.4. This time we took her to the oncology clinic at Primary Children's. They gave her IV antibiotics and sent us home. We hung out at my mom's house for fear of having to go back to Primary's. We postponed our Florida trip too. There's no point in taking Bree if she's going to be miserable and not feeling well.
Tuesday we took her back into Primary's with the same fever. They admitted us because they had no idea what was causing the fevers.
Wednesday they ran a million labs looking for some kind of infection and found nothing so they discharged us and sent us home. Once again we went to my mom's for fear of having to come back. That night her fever spiked to 105! She continued to spike at 105 all day Thursday, only coming down to about 101 with Tylenol and Advil.
Thursday night she went to bed at 7:30pm and slept till 2pm Friday afternoon. I called clinic in a panic. They told me to bring her in and they admitted her. We are currently still here. They still have not found anything. But her blood counts were low so they have her a unit if blood. They are blaming her sleepiness on the low blood counts. Her fever has come down to about 100.8 which is good. But I'm so frustrated with no answers!
I'm so sad that we missed Florida! The kids were so excited to go. Maybe in a few weeks we can go.
I hate cancer! And I hate chemo! It turns my beautiful baby girl into the biggest brat! She has been so funny, nice, sweet, and loving since we were done with radiation, chemo, and steroids. Now, starting chemo again this morning, she was a beast all day! She was sick and didn't want to eat anything. She screamed and hit Byrklee. She wouldn't share her popcorn with Bryker. And cried the entire time that Grandpa Potato and Grandma Wendy were here. She was a beast! Why does cancer have to ruin everything? Why does this sweet, beautiful little girl have to go thru this horrible nightmare? Why can't it be me? She's precious and innocent. She is so young and has so much potential! I've lived my life and have had my fair share of trials and joys. Why doesn't she get to have hers? Why won't she be able to learn what life has to offer? She feels so yucky but doesn't understand why. She has no idea how many people love her and want her to stay here. I just want to go back to February and stay there forever!
Wow it's been week since I've updated this. We've been so busy!
By the end of the day I'm exhausted and this is the last thing on my
mind. We had a busy Mother's Day weekend. It started with Saturday
we pulled out our big bush in the front of the house to start Brylee's flower
bed. She promptly threw up everywhere twice so that project got put on
hold for the rest of the day. We also noticed that she's been having
trouble chewing a swallowing again. I noticed this first on Thursday when
she choked on some water. I then caught her on Saturday squishing string
cheese on the roof of her mouth instead of chewing it. I called the on
call oncologist Saturday night to see if I should be worried. She said
that she would have our doctor call us on Monday.
On Sunday morning we went up to my mom's house and visited with my Grandma
and Grandpa. They are amazing and drove all the way from Mesa, Arizona
to visit. The funny thing is they only stayed for about 2 hours then went
back home. I love seeing them and wish I could see them more often.
My mom gave me a Mother's Day card that kinda struck a cord with me. It
made me so sad because she is so wrong. She said something along the
lines of that she hasn't been supportive of me during this time with Brylee and
that she guesses my friends are doing a better job than she is. You know
out of all the people that are being supportive mine and Cory's family are the
top dogs. I mean my mom bought a king size bed and put it in her living
room so my family had somewhere to stay for the 6 weeks of radiation! If
that's not supportive I don't know what is. Cory's family has been
supportive by helping with the Brylee in 5 fundraisers. And everyone that
is there for us and listens to our woes are supportive. I don't want
anyone to think that they are not being supportive. If you read this blog
or say hi to us in the grocery store that's being supportive. And it's
good enough for me. I don't need millions of dollars or a million cards
for support. A pat on the shoulder is all the support I need. A pat
on the shoulder tells me you care and are thinking of us. A text or
facebook message saying thinking of you is good enough. It's comforting
and warming to know someone is praying for Brylee or wondering how I'm doing.
I appreciate every single one of our family and friends. I couldn't make
it through this trial without every one of you out there. I don't want
anyone to think that I'm ungrateful. I appreciate every act of kindness
offered. Most of which bring me to tears. I have never seen more
Christ in the world than I have since March. We have been graced with his
love and your love. We will forever be in your debt.
Monday I got the phone call from Brylee's doctor about her chewing and
swallowing issues. She said she wasn't overly concerned about them but
that she wanted to see us on Wednesday. She said that we might do another
MRI on Wednesday. When I got off the phone with her I laid Brylee down
for a nap. I noticed that her left eye didn't close all the way like it
used to. I was in full panic by Wednesday. I had nightmares of the
tumor growing again and her not making it to her 3rd birthday or to Disney
World. I was so shaky by the time we walked into clinic on Wednesday
morning. Her doctor said that after looking at her 2 MRIs she didn't
think the tumor was growing. She explained that when kids with
neurological complications get tired their deficits show themselves. The
doctor then said that she feels confident about putting us in a new stage of treatment
called maintenance. In this stage we do 5 days of heavy chemo then 4
weeks of nothing then 5 days of heavy chemo then 4 weeks of nothing then an
MRI. We start the heavy chemo on Friday! Brylee also developed
another fever which they gave her an infusion of antibiotics while we were in
clinic. Her doctor told me that she's suspicious that all of these fevers
are related to the damage in the pituitary gland and hypothalamus.
Brylee's tumor was so large that the area of the brain where the pituitary
gland and hypothalamus are was hit with a significant amount of radiation
scatter. From her diabetes insipidus we know that the pituitary gland was
damaged. Now that she keeps developing fevers for no reason her doctor
thinks that the radiation scatter may have damaged the hypothalamus also.
The hypothalamus regulates your body temperature, blood pressure, reproductive
hormones and several other things that I can't remember. This theory
makes sense because none of Brylee's blood labs ever show an infection.
Well I will try and do better at updating this lovely journal of mine but
I'm making no promises. Today I need to finish cleaning my house.
Tomorrow we need to finish Brylee's flower bed so we can plant all the flowers
before we go to Disney World so they don't die. Cory and I also need to
finish painting Brylee's room sometime this weekend. Saturday is so busy,
I don't know how I'll survive it all! I have a 2 hour boot camp in the
morning which goes straight into Moving Morning with Brylee at the Price
Theater (We're watching BRAVE! So come join us at 11AM). Then I
have to come home shower and get ready then go up to the elementary school to
decorate for Brylee's birthday party. Then we have to celebrate Brylee
turning 3! Then Sunday we have church then the golf tournament at the
Carbon Country Club. Then Monday I have to pack. Then Tuesday we
are on the airplane headed to Florida!!
Whoot whoot! So excited for a vacation! We'll be back home on the
Keep the prayers coming and know that we are so humbled and grateful for any
measure of support from everyone! We love you all! Each and every
one of you have touched my life. I hope that we somehow have touched your
life and continue to touch many lives in the future. I know that Brylee
will change the world whether it's here or in Heaven. She is meant for
missionary work and she will be an instrument in the changing of lives on this
earth and on the other side. She has already had an impact on my life and
she continues to change my out look everyday. I am truly blessed that I
even get her for this short amount of time. I love her and I love our
Lord that has blessed me with her life. I'm so humbled that He trusts me
with such a choice spirit.
I have a surreal feeling every time I think about Brylee's brain tumor. It's almost like I dreamed the entire thing up. Our days are basically back to normal, as normal as they can be. The kids are running around, laughing and playing like nothing ever happened. Cory and I have been going about our normal lives and chores around the house. It's hard to believe that she is terminally ill at all. I have to catch myself when I'm going out to do errands to make sure I remember not to invite her so she doesn't catch a bug. I have to catch myself when I come home to make sure I put on hand sanitizer so I don't bring anything into the house. I have to remind myself to take those extra minutes that she wants me to hold her instead of telling her in a minute while I pick up the dishes. I forgot to do most of these things today. I got so wrapped up in how well she is doing that I forgot she had that stupid brain tumor. I invited her to go to Tae Bo with me this morning only to have the ten minute melt down when Cory reminded me that it was a bad idea. I forgot to hand sanitize when I got back from the store. Cory, once again and always my hero, had to remind me to wash up. I got so frustrated with how big of a disaster my house is that for about an hour or so I kept telling her to leave me alone while I tried to clean. When I found myself accomplishing nothing I finally remembered that this sweet little girl is on a short time frame. I immediately sat on the kitchen floor and scooped her up. She promptly snuggled into my shoulder and fell asleep for over an hour. I made Cory go get take out so I didn't have to wake her up so I could make dinner. While I was holding her I wondered how I got so wrapped up in my mundane activities that I forgot about this sweet little girl and spending every waking moment with her. I looked outside at the flower bed I'm suppose to be building for her and got so frustrated. How am I suppose to do a lifetime of stuff in 9 months or less? How am I suppose to give this little girl everything she asks for with neither Cory or I working? We are so blessed that everyone has been so generous with their help. If it wasn't for this amazing community our house payment would be getting paid. Our electricity, gas, car, and food wouldn't be getting paid for either. But for some reason I'm finding it hard to spend any money on a flower bed because I look at it as a car payment or dinners for the next month. How am I suppose to give her everything when I don't have it to give? I think I get so caught up in my everyday activities because when I have down time like I did today while she slept on my shoulder I think about all these questions and I just cry. I cry and cry and cry. I love her so much and my heart just aches.
It's been several days since I've written anything. I've been so bust with physical therapy, speech therapy, occupational therapy, and nurses that I haven't really done anything with my time since Thursday when we got home from the hospital. We had a fabulous and fun fundraiser on Friday night at the Holiday Inn. We played Bingo and it was a blast. Brylee's ANC was pretty good so we took her to it. She only lasted about an hour and a half before she got tired and we left. I wish we could have stayed the whole time. On Saturday we did nothing but work at our house. Cory cleaned up the yard while I finally unpacked and did laundry from March! Granted nothing got cleaned but almost everything got put away hahaha.
I need to give everyone an update on Brylee. Everyone has been asking how she's doing and what the next steps are in treatments. So here it is. Brylee is doing extremely well. All the therapists are making a huge difference in her walking and talking abilities. Her mouth muscles are still not as strong as they use to be so her speech is a bit slurred. But she is chewing and swallowing well and she's actually talking to us again. I have my little chatter box back!! Allow she may have to repeat her sentence four times before I understand her. She is walking well. Her legs are still a little stiff but she's trying to walk. She'll walk till her legs give out and she falls over. Then she'll push her self off the ground and walk some more. She is such a strong willed little girl. She's my inspiration when I complain at Tae Bo and Boot Camp. She never gives up and I'm so willing to quit! Ha she teaches me so much everyday as I watch her struggle but yet still have such an awesome outlook and a positive attitude. Christ said to be as little children and I can totally see why now. She is so strong and such an inspiration to me throughout my day.
As far as treatment goes we are finished for now. Her doctor is scheduling an MRI for the end of May. Depending on what the MRI show will depend on our next step. If the MRI shows shrinkage and stability they will declare the tumor in remission. This means that we will enjoy life with no meds and very few doctor visits for the next 4-6 months (or until symptoms start showing again). When the symptoms come back they will do an MRI to see where the tumor is at growth wise and then most likely put her on a chemo and a steroid. If the MRI at the end of May shows growth and unstability they will put her back on chemo and steroids and we will go from there. Brylee will never do radiation again. The six weeks of radiation that we just finished is a life time worth of radiation for anyone's body. Sadly that will never be an option again for us.
Just a remind on what studies and statistics show for a DIPG tumor. Once they are diagnosed the patient does a six week course of radiation, chemotherapy, and steriods. Once that six week period is over they get four weeks off. At the end of that four weeks they get an MRI. The MRI usually shows that the tumor is in remission. The tumor will stay in remission for about 4-6 months, giving the patient a normal, symptom free 6 months. Then the tumor will start growing again, this time fast than the original growth. The patient is put on chemo and steroids to try and stop the growth. The tumor usually does not respond to this set of treatment and the patient passes away within a few months. 5% of patients will do this roller coaster of remission and treatments for 3 years before passing.
Brylee right now is showing no symptoms. Cory and I are hoping that this means she is in remission and we get to enjoy our normal Brylee for 6 months or long. We are praying that she is it that 5% so we have her more than her short 3 years that she has been with us (it will be officially 3 years on the 21st! Happy almost Birthday!).
Yesterday Brylee told me she wants her room painted pink and that she wants to plant "Cinderella flowers." WHAT?! Where did "Cinderella flowers" come from? Hahaha I did a lot of flower hunting online with her on my lap looking at pictures. She finally pointed to a picture of a purple hyacinth and said "That's a Cinderella flower!" So this week we will be pulling out one of the bushes by our front door and making a Brylee flower bed. And hopefully we'll get to paint her room this week also. I guess the house work is once again put on hold. But it's totally worth it!
We need to stop going to the hospital! This is meant to be a daily journal and it has now turned into a weekly journal. We took Brylee back to Primary Children's on Sunday for excessive drinking and urination. Of course I was freaking out thinking I had another Type 1 Diabetic on my hands. Brylee literally drank a 32 ounce powerade every hour on Sunday and went through an entire box of 44 diapers! I was so freaked out that I checked her blood sugar which came back 66. This caused me even more confusion so I called her doctor. Her doctor said it might be something called Diabetes Insipidus and that I needed to take her straight to the ER and that I needed to pack for 5 days. So 30 minutes to pack and a 2 hour drive with 5 diaper changes and we were finally there. There did some blood work on her and confirmed that she has Diabetes Insipidus. This disease is caused one of two ways: 1. Your kidneys stop working properly and stop accepting the ADH hormone that tells your body to maintain your water intake. 2. Your pituitary gland in your brain has stopped producing the ADH hormone. Brylee has number 2. It's technical name is Central Diabetes Insipidus because it is located in her brain. There are several things that cause this to happen, one of which is a tumor in the pituitary gland. Considering Brylee's history of brain tumors her doctors were very concerned that it was a second tumor. They wanted to do an MRI.
There have only been two times in my life that I have been so nervous and anxious that I have thrown up. The first time was after her very first MRI in March. I couldn't hold anything down for three days. The second time was Tuesday on Wednesday. I was so nervous for that MRI. I couldn't think about anything else. Wednesday morning finally came. We took her downstairs for the MRI. They put her under general anesthia once again and whisked her away. I thought I was going to lose it for the two hours she was gone. Every time anyone in scrubs walked by the waiting room I had a flash back to March 6th and my heart started racing. I was so high strung that I had to run to the bathroom. I have come to hate that waiting room. I hope I never have to see it again.
The doctors finally came and took us to Brylee in the recovery room. They were still going over the MRI I had no news for us. We got to take Brylee back up to her room and waited for another hour. When they finally came into our room to tell us the news I thought I was going to pass out. I was so filled with dread. When they said there is nothing but good news I immediately jumped up off the couch and screamed "Yay!" They proceeded to tell us that there was no second tumor and that the radiation had damaged the pituitary gland causing the onset of the diabetes. They then proceeded to tell us that her original tumor has shrunk significantly! It hasn't disappeared but I wasn't expecting it to have vanished. I have been so thrilled the past few days. Although there is so much relief and excitement I can't help the dread in the back of my mind. I know that this demon will start progressing again eventually we just don't know when. So everyday I watch and make sure she can still chew and swallow. I watch her when she sleeps to make sure her eyes still close all the way. I listen for her night terrors in the middle of the night or the scream when she's in her car seat and she thinks she's falling. Every time she looks at me I tell her to smile to make sure each corner turns up in that beautiful crescent of hers. I tickle her sides and feet to make sure she's still sensitive. I have her squeeze my hand to make sure she still has the strength. I am being optimistic but every time I feel some of the doubt and fear I make her completely each one of these tasks so I know she is still okay and that she is still mine.
Yesterday was a day without Brylee for me. Byrklee (my 1 year old) had
a well baby check up north with my pediatrician that I will never part with no
matter how far away I move. He is one of the most amazing doctors and has
been with us through Bryker's diabetes diagnosis and now Brylee's. I also
had my last final up at Weber
State. Needless to
say Byrklee and I got some much needed mommy daughter time. I had a
totally different attitude than I normally do on these occasions. Usually
its hurry into our appointment and run to the car carrying the kids to get to
the next commitment. However, on this day, it was walk slowly into the
doctor office and enjoy the warm spring air. We sat and chit chatted with
our favorite nurse, Jetta, and with our Dr. Owen. We laughed at Byrklee
as she danced around the appointment room. Then instead of scooping her
up and running out the door I let her walk. It probably took us ten
minutes to get back to the car. Her little legs working vigorously to
climb every chair in the waiting room. She then proceeded to squat down next to
each pin wheel in the garden and blow on them each in turn. She explored
the rocks and the cement. She even tried to pick at some gum on the
ground (mama intervened on this one!) After my final we went to the mall
to get me a much needed belated birthday present. This too was a
different experience as we sat on the bench and watched everyone hussle bussle
past us. Moms were hurrying their children and yelling don't touch this
or that. I know that everyone has their own story and their own wounds
that need healing, but mine has taught me to not just live life but to
experience life. You never know what will be thrown in your
direction. It saddens me to watch the world let all the important moments
Today we got the results of Brylee's most recent blood labs (yesterday they
were drawn). Her counts still aren't the best but they have
improved. Her platelets are still extremely low. I'm worried that
she'll be getting another infusion on Wednesday at clinic. However, her
white blood and red blood counts were high enough that she was able to go
outside. She said she wanted to ride her bike! Cory walked her up
and down the street for almost an hour. When they finally came in the house
for dinner she wanted to sit on my lap. As I was holding her she fell
asleep. She was so pooped out for playing so hard after almost two months
of not playing. She slept for almost two hours. Within the first
ten minutes my legs fell asleep but I didn't move or adjust her for fear of her
waking up. I didn't want to lose out on such a precious moment and the
opportunity to cuddle my baby. I even cried as I watched her peaceful
face as she slept, wondering how much time I have left with her.
Years? Months? Weeks? Days? No one knows. There
are many nights that I pray to God that he will tell me how long we have.
I pray that he'll take this from me and tell me well done. I pray that he
gives me the strength to keep going on because most days I feel weak. I
pray that I will be the inspiration everyone tells me that I am. I pray
that he sees and catches every tear I spill and that he will lessen my pain and
heart ache. I pray that this is just a nightmare only to open my eyes and
it's still raining. I yell into the storm and wonder if he even hears me
Today has been...well a day. It's been a very emotional day for me today. It all started last night when I decided to open a book that I bought last week. It's called Notes Left Behind. It's about Elena, a little 6 year old girl, who died from a DIPG (Brylee's same tumor). It's her parents journal as they were traveling down the exact same road we are now. I got three pages in and immediately started sobbing! I don't know what I was thinking when I picked up that book. I guess I'm longing for someone who gets why I feel the way I do. I'm angry and bitter, sad and lonely, humbled and spiritual. But most of all I'm lost. I don't get it. I don't understand why my sweet little girl and family have to go through this awful trial. I like to think that I get it and I often say wise words about why this is happening. Something along the lines of she is here to teach people how to serve and care. Teach how to take each day a second at a time and actually live life to the fullest. But in all reality I don't understand. I feel like my heart is getting ripped out of my chest daily. I get so wrapped up in the pain that sometimes I get offended too easily by something someone said out of innocence. Or I get offended by something no one said at all! I know there are many people that have offered their shoulder and I've taken some up on it, but sometimes it doesn't help. I need someone that knows what it feels like. I need someone that knows what it is like to watch your own daughter go from bouncy, and chattery to almost nothing at all. Yes, radiation and chemo helped her symptoms like swallowing and being able to smile, but it also took away her innocence. She has no drive to be here on this Earth at all. If she's hungry I'll put food in front of her and, even though she can feed herself, she'll just stare at it. There is no drive to meet her own needs. She would literally starve to death staring at a plate of food. It's absolutely crushes my whole soul! Twice today she picked her lips till they were pouring blood because she was having anxiety about the nurses at the house. I thought coming back home would be good for her and make her come back to me. It completely failed. This book talks about how Elena hide notes everywhere for her family to find after she had left this world. The notes always had a heart on the front that said how much she loved them. Brylee won't even look at me when I tell her I love her. Does she know that I will always love her? Does she know she's dying? Does she know how much I hurt? Does she know I long for her even when she's sitting right next to me? Does she know?
Brylee had a very long week this past week. It all started with her last day of radiation! We were celebrating and getting ready to come back home to our house in Price. That's when the fever of 102 hit on Tuesday night around 9PM. I called the on-call oncologist and they said to immediately take her to the ER. So off we went. (I was smart this time and packed a few days worth of stuff in a duffel bag.) When we got to the ER I told them who we were and why we were there. The doctor had already pre-registered us. So they took us back to one of the triage rooms. They put us in the isolation one because she has cancer and has a higher chance of getting germs and infections. We were then taken to a room where they drew some labs to try and figure out what was causing the fever. They then put us on some precautionary antibiotics to get a jump start on whatever bug she has. We were in the ER for what felt like an eternity when the ER doctor finally came in and told me her blood counts were extremely low. Her platelet count was 17! A normal person is 100-150! They said that once we got up to the cancer floor (ICS) they would most likely give her some platelets and watch her fever for a few days. We then were taken up to ICS. We got there around 3AM. Brylee and I tucked into bed and fell asleep. An hour later at 4AM I woke up because I felt Brylee moving a lot. When I opened my eyes there was 20 people starring at me! The doctor proceeded to tell me (as they were running the bed containing Brylee and I in it down the hall) that Brylee had a rare reaction to one of the antibiotics and that her blood pressure had crashed. She told me that they were giving her lots and lots of fluids to try and keep her blood pressure up and that they were taking us to the Pediatric Intensive Care Unit (PICU). The EMT in me asked what her blood pressure was at. When the doctor told me that it was 50 over 20 I about peed my pants! I didn't really have any concerned emotions though because I was still in the waking up fog from having only an hours worth of sleep. When we finally got to the PICU they gave her a special med that forced her blood pressure back up. We were in the PICU from 4AM Wednesday morning till Friday afternoon. While we were in the PICU they kept her on the antibiotics and slowly weened her off her blood pressure med. There was only one time that she started to drop again and they bumped the dose back up. We were in the PICU for her first transfusion of platelets ever in her entire life.
Now let me explain the platelet transfusion because I have had many people ask me what the difference is between that and a blood transfusion. Platelets are part of the blood. The lab separates them from the rest of the blood for people like Brylee who might need just platelets and not red and white blood cells as well. Platelets are a weird yellow color (they reminded me of nasty snot). They also started her on a special shot of meds that was suppose to help her blood counts to come up.
On Friday they transferred us back up to ICS. Friday was Brylee's first blood transfusion in her entire life. Despite the platelets on Wednesday and the special shot of meds in her thigh her blood counts continued to drop to scary levels. Her ANC (don't ask me what it stands for because I'm not sure but I know it has to do with her red and white blood cell numbers) was a 0.1. A normal person is 1.5-8.5. So they decided to help her out a little bit and give her a unit of blood. Before the blood she was so pale and exhausted! But within 10 minutes of the blood transfusion she was playing with puzzles and had rosy cheeks! It was incredible to see the change in her little body.
Saturday morning the doctor came in and said that we were going home today and that her platelet count was still dropping and they were going to do one more platelet infusion before we were discharged. They platelets came up to the room at about 2PM. The protocol is for the nurse to stay in your room for the first 15 minutes of the infusion. So while our nurse was in our room while the platelets started she took Brylee's feeding tube out! It was so happy that I was trying to get Brylee to smile and take a picture. All Brylee could do though was grab at her throat. We all thought that she was probably feeling weird that the feeding tube was gone. The nurse left our room after 15 minutes. Right when the nurse left Brylee started throwing a temper tantrum. Cory and I were the awesome parents telling her to knock it off. At the same time Cory and I both stopped and starred at her. I then turned to him and asked if he saw her swelling up too. He said yes and we immediately called the nurse. Within 1 minute I swear the entire hospital was in our room! Brylee had gone into anaphylactic shock. She was so red and swelled up so much she reminded me of the girl from Willy Wonka that turned into a blue berry. It was the scariest thing. I was standing in the corner of the room watching all these nurses and doctors breath for my daughter and pump her full of meds trying to get her back. They finally had to stab an eppy pen into her thigh to get her to come back to normal. They almost took her back to the PICU because the eppy pen was taking so long to effect the anaphylaxis. She finally started to be able to breath again and finally stopped swelling. They kindly told us we were not being discharged anymore and that she was now on a 24 hour watch. They put her on a strict Benadryl regimen to try and keep it from not happening again. Sunday morning came and they told us we could go home. They said her platelet count was still low but they weren't going to risk another infusion.
We came home on IV antibiotics with no reason for her fever and a very hectic week where we almost lost her twice. I'm officially pooped out! But I'm happy to be back in my own home. It was so surreal when we walked in the house though. The calendar was still on March 5th. The second car has a layer of dirt on it. My bamboo is dead. I'm thankful to my sister in-law that my cat and fish are still alive. It feels like we haven't been here in a million years. I'm excited to be home, but I'm scared to death to be so far away from her medical team.
Brylee finished radiation today! We are so excited to finally be done and on our way home soon. She had her first outing on Sunday that was not to the doctor's. When went to my dad and step mom's house for my birthday dinner! She actually played with a car while sitting on the ground! It was funny to get out of the house. She thought we were going to the doctor and cried the majority of the way. She didn't smile when we arrived but at least she stopped crying when we pulled into the drive way.
We just wanted to say thank you the the Huntsman Cancer Institute. They are an amazing group of people. They made radiation fun and not scary. They were great listeners and very understanding of my many tears. We have all become great friends and they have been a huge part in trying to save my daughter's life. Even though it is just their every day job, it was much more to us. They literally held our daughter's life in their hands. They were willing to fight for her and that gave us courage and hope. They have truly made an impact on our lives. And even though, on the way out the door this morning, I told them all I hope I never see them again I will forever cherish them in my heart. I hope that one day our paths cross again on happier notes. (I might even stop in and say hi!) We will forever remember them as our super heroes!
This is really scary for Cory and I to be done with radiation. Radiation gave us the opportunity to look forward to something. It gave us something to do in fighting this horrible tumor. It gave us comfort to know that a doctor was seeing her everyday and would be able to catch the tinniest change or challenge. No that we will be sitting for four weeks, waiting, it is going to be very hard and full of anxiety not knowing if it truly worked. And, according to statistics, this is the only time she will ever do radiation for this tumor. When it starts growing again the doctors will have to resort to something else, such as chemo or drugs. I hope and pray that it is in remission and we will have a solid 6 months of our healthy daughter back before we have to do it all over.
I just wanted to universally say thank you to everyone for the fundraiser last night! When Cory, Bryker, Byrklee and I got there it was so much larger than I was anticipating! I heard Mallery advertise it on the radio right when we pulled in and I saw the full parking lot. I immediately started crying! When we got out of the car we were welcomed with a crowd of amazing people. Hugs, hellos, sorrys, and tears were all around. I have never felt such overwhelming love. I then received a tour of all the events. I was welcomed with looks of awe and the question "Is this the mother?" So many people hugged me and said they look up to my strength and that I've been an inspiration. When in truth you have all been an inspiration to me. I have never met or lived in a community that is so willing to run and help at the drop of a hat! I was embraced by so many young girls that told me they love my daughter and they hope she makes it. I even had a few had me pictures that they had drawn for sweet Brylee. I met so many amazing people last night that were so willing to help such a complete stranger. One in particular was Tatum. She put together an amazing yard sale and had never met me until last night. She raised over $1,800 for someone she has never met. I am so humbled by the amount of grace and love she has. She told me that she looks up to me when the role is completely opposite, I look up to her more than she'll ever know! I hope we will become fast friends as I have so much to learn from her. A very special thanks to Moira, Keri, Jamill, April, Misha, and Nikki (especially Moira because she was the mast mind behind the whole event) for putting this event together. I am so blessed and lucky to have such amazing women in my life! I know I didn't just meet them by chance. God never makes a mistake. God will always determine who walks into our lives. It is up to us to decide who we let walk away, who you let stay and who you refuse to let go! I am so grateful that God has let all of you walk into my life, and Brylee's. And I will never let any of you go. I cried all night long and the entire drive home and all day today. Every time I think about what our amazing community is so willing to do I shed tears. Thank you so much for all your love and support. And just know it does not go unnoticed but I'm not capable of all the thank you cards that are called for in this case LOL! Thank you from the bottom of my heart!
So I was getting ready to hop in bed when I remembered I hadn't written anything yet for today. And I was about ready to say forget it when I realized that if it were a bad day I would have already written something on here. But since today was a good day I was so willing to brush it off. That made me get out of bed and sign on to write today! This is a time when it is so easy to focus on the sad moments and depressing feelings that we need to celebrate when there is a good day, a laugh, a smile, and good news!
Brylee took her last dose of chemo today and Tuesday is her last radiation therapy! Then we play the wait game until her next MRI in...June I think? I thought we had radiation until the 19th but her radiation doctor told me today that my schedule is wrong and she graduates on Tuesday! It's bitter sweet for me. I'm so ready to be done and go back home and try to be normal again for as long as we can be. But it also makes me kinda nervous to not have a doctor look at her everyday! But I'm ready to sleep in my own bed and give my kitty a hug!
Over all it was a really good day today. Brylee talked more than I've heard her talk in over a month! Instead of just crying until I guessed what she needed she would actually say "Mama I need blah." So happy!!!! I don't have to play the guessing game anymore! She has smiled so much today and laughed over everything! I feel like she's coming back a little bit at a time.
Cory gave me the best birthday present today (although my birthday is technically tomorrow). He made me a DVD slide show of every picture of Brylee that we have! I cried for the entire 22 minutes of slides. I was the best and most horrible present ever! Kinda like in Madagascar 3 when Alex the lion says "You both made and ruined my day!" It was so sweet and it will totally be my best, most cherished present I'll ever get. Love you Bree!
Today was a horrible day! I was trying really hard to be positive but it just wasn't working. We went to Brylee's radiation, which went great, then to clinic. I swear I had a million questions for her doctor. Each question she answered was negative. My worst fears were confirmed. Her tumor is called a DIPG tumor. The abbreviation is a diffuse intrinsic potine glioma. Basically, in english, a tumor in the pons, or middle of the brain at the top of the brain stem. This specific tumor is not just a ball it is intertwined into the tissue of the brain stem. Brylee also can not come off the steroids or her feeding tube. She can eat whatever she wants but we need the tube to administer her medications to her. I guess that part makes sense because she is literally getting around eight meds at one time and there is no way I would be happy taking them, let alone a two year old. Her steroids are not tapered off enough to just stop them cold turkey. So a little while long on them. She also has to start physical therapy tomorrow because she is not using her arms or legs. This is not because of the tumor. The day before we went in for her MRI and she was diagnosed she was running around like a crazy, wild child and talking up a storm. The minute they admitted us into the hospital all of that stopped. The doctor and I were talking and decided that it is most likely anxiety that is casing her to shut down and withdraw into herself. But now that she is feeling better and would maybe want to walk she literally can't now. She has gained so much weight because of the steroid and she hasn't been walking to keep up the muscle mass. So we're starting to learn how to walk again. We have no reasoning as to why she won't use her arms. But I guess the steroid takes away muscle mass as well. So she hasn't been walking in a month, steroid taking muscle mass, and gained a lot of weight. I can see why she is having issues. Her blood counts came back today and most of them are good. The only low number are her platelets. A normal person is between 100,000-150,000 and she came back at 71,000. The doctor said that they normally do a platelet infusion when they get to 35,000. Hopefully we never reach that point! Brylee also is starting to have some issues related to the radiation. She is getting sores in her nose, thus the nose bleeds for the past week or so, and sores behind her ears where her glasses sit. The doctor told us not to let her wear her glasses and we need to start putting hydrocortizone cream on her ears. On a hopefully happy note her doctor is going to look into that study at Johns Hopkins and Cornell for us. I hope that we are eligible for it. Her doctor seemed really excited about the idea behind the study which gives me warm fuzzies. Even if it can't save my little girl hopefully one day it will save someone else's.
We met with Make-A-Wish last night! We are all really excited for it. We asked them to send us to Disney World and Give Kids The World. I really hope it gets approved by her doctor. It will be our first family vacation and most likely our last.
While we were at the clinic with Brylee my mom called us in regards to our son Bryker. Bryker is four and was diagnosed with Type 1 Diabetes when he was 15 months old. I guess Bryker had been peeing a lot and throwing up at my friend's house. So my mom went and got him. Well his blood sugar was 497 and his blood ketones were 3.7!! He was totally fine at 8:30 AM and my mom picked him up at 11 AM! GEEZ! His insulin pump informed us that it had a delivery failure. So it was a frantic afternoon trying to get his numbers under control so we didn't have to make a trip to the ER.
With all that said this makes me truly frightened for our youngest daughter Byrklee. She is 15 months old this month and I'm scared she's going to end up with some incurable disease like her siblings! Our track record isn't the best. Cory and I had planned on having four kids and we were planning on trying for our last this summer. After Brylee got diagnosed Cory asked if I still wanted another one. I said no I can't handle another heart break! Obviously our gene pole isn't too grand and I'm not about ready to bring another innocent child into this world to just go through H E double hockey sticks!
Brylee had an interesting day today. It was such a mixture of emotions. She's been really grouchy and yelling a lot but at the same time it's the most I've seen her smile today! She actually wanted to go outside so we went on a walk. She was so excited because she saw her first plane today! It's amazing what glasses can do for someone! She was so happy to be outside. I've been trying to get her to got out almost every day but she keeps saying no. I was so excited when she said yes today. Thank you for everyone involved in the yard sale yesterday! We are so humbled at the out poor of support.
We're meeting with her wish granters from make a wish on Tuesday night. I'm really excited! I'm thinking we'll do Disney World. Unless they can get something different out of her hahaha. How do you get a 2 year old that has stopped talking tell you what her deepest wish is? I was thinking Disney World because she is in love with Cinderella and the other princesses.
We've been looking into a clinic study for her. I've researched a lot of them at St. Jude's and other places. Everyone is doing exactly what we're doing a Primary Children's. The only one that is different and stands out to me was one a Johns Hopkins in New York. This study does a surgery to put a canula into the tumor. This way they can administer medications and chemo straight into the tumor and completely by pass the blood brain barrier. This is the first time they've ever used a canula on a DIPG tumor. I know they use them on other brain tumors but a DIPG is in such a fragile place in the brain that they've avoided surgeries. I'm pretty positive that this is the same tumor Brylee has. Her doctor has always called it an infiltrating brain stem glioma but every time I put that into google to read up on it all the information of a DIPG comes up. DIPG stands for diffused intrinsic pontine glioma (the I also sometimes stands for infiltrating). Her tumor and a DIPG have the same symptoms and survival statistics. I'm going to confirm on Wednesday when we see her doctor again. So don't quote me on it! I feel kinda stupid that I don't even know 100% on what her tumor is called. I guess I was pretty hysterical and didn't retain the information. Who could blame me right?
Anyway this is just an update on Brylee. I personally had a rough two days. I've been doing a lot of research this weekend trying to come up with a way to save my daughters life. Every time I read another article I start crying. Every article says the same thing "There have not been any advances toward a cure in 30 years." or "Prognosis for a DIPG is not good and new diagnosis only survive 9-11 months." It almost seems hopeless. But I'm willing to try anything. I've even been looking into changing her diet. But who knows if any of it will work at all. I feel like I'm grasping at thin air.
I called the on call doctor today. Brylee has been having nose bleeds all week. It's almost like a leaky faucet. It's not gushing blood out like it did on Sunday but almost like a slow leak. The on call doctor said she doesn't think it is her platelet count, which is good. She thinks that due to the radiation Brylee has developed sores in her nose. She explained that sometimes kids will get sores in their mouths and nose. If the bleeding gets worse we need to take her to the ER. Today was really hard slightly from that news but also because of Brylee herself. She's been rotten today and just down right mean. She full on yelled all through conference that she didn't want to watch this stupid show and that she wanted to watch her show! It was really hard to pay attention and hear anything. So no spiritual uplift today and I was really looking forward to it. My life needs all the spiritual uplifting it can get right now. I've been trying really hard to be optimistic but I just can't be today. I've been noticing somethings that have me worried and scared. Last week I remember noticing that Brylee could close her eyes all the way while she slept and that her drooling had stopped. I noticed that she could smile completely and raise her eyebrows and many other happy things. Today I noticed that her eyes don't close all the way anymore and that she started drooling again. I'm worried that the tumor has started to fight the radiation and chemo and has started to progress again. The awful part is that the doctors aren't doing another MRI until June. Radiation is suppose to be effective for four weeks after the last treatment. Our last treatment is April 19th. Put the four weeks after that will land us right around Brylee's 3rd birthday for her next MRI. I was reading this blog about a little girl that has Brylee's exact same tumor. She passed away in 2009. She fought her tumor for around 16 months. Just reading that mom's emotions and pain brought tears to my eyes. That mom finally let go of her little girl, who was 6, when that little girl said mom I don't want to do this anymore. They stopped treatments and just took her home. I don't know if I can do this that long. And I don't know if I'll be ready to ever make that decision to just stop. I'm so heart broken right now. Every story I have read has come to that end. The decision to stop treatment has always been the final act. Then you just have to take them home and watch them deteriorate before your eyes. I don't want to do this. I don't want this to be my trial and pain. I can't do this.
Over all I think today was a really good day. Brylee started actually playing. She hasn't done that in awhile. She played puzzles all afternoon with my mom. She looks really uncomfortable though. The steroids that she is on are causing her to retain a lot of water weight and gain actual weight. This is making her feet really swollen. They look like they hurt...poor thing. She's been eating like crazy! Holy cow manure this girl can put away food like no ones business! Who woulda thought that a month of not eating would do this to a person? For lunch she ate like 20 chicken nuggets and 2 pieces of pizza! I'm seriously thinking about taking her feeding tube out myself because she is doing fine chewing and swallowing. She hasn't choked once all day long! It's so amazing watching her improve and do better on tasks that she hasn't been able to do for a year. She's smiling, moving her eyebrows, closing her eyes all the way and chewing and swallowing. It's hard to be optimistic though because I keep thinking about how she is doing exactly what the doctors predicted. I don't want them to be correct in how this tumor reacts to treatments. I really hope they are wrong...
I get to add another blessing to my ever lengthening list. We've been blessed in many odd and numerous ways lately. It all started when my husband lost his job in November. Losing a job doesn't seem like a blessing when it happens but it is. He is now able to be here with me and the kids during this time of hardship. We've been blessed with numerous out pourings of help from everyone. We've been blessed with Medicaid, another plus from losing his job. Medicaid is covering all Brylee's medical a hundred percent so we have no out of pocket for her therapy and medications. We lost unemployment right when the first bracelet fundraisers started coming in. It's truly amazing how things worked out (I won't go into all our financial details). Today was just one more testimony builder about how we've been blessed. When our life insurance policy found out about Brylee they said they needed to re-evaluate it. That was two weeks ago and it has been non-stop stress worrying about if they drop her how are we going to pay for a funeral when the time comes. They finally got back to us today and told us that they are not dropping her from our life insurance policy! God works in mysterious ways.
Geez what a day!! It was great and long. It started at 6 this morning with getting up, getting dressed, and Brylee crying that she wanted chocolate. Out the door by 7 for radiation. More crying from Brylee about not wanting to go to the doctors. When they brought her back to us she didn't fight today. She was actually very nice and peaceful (maybe it was the m&m's I was sneaking her! lol). On the way home I sat in the back of the car and gave her m&m after m&m. It's amazing how much she smiles when there is chocolate involved!! A girl after my own heart. When we got home I went to give her all her meds and start her feeds through her feeding tube. Well it was clogged!! We tried for over an hour to unclog the stupid thing. I ended up giving her the meds through her mouth and calling the clinic at Primary Childrens. They told me to bring her in. I took her in and they did our entire clinic visit. They drew labs and refilled meds and talked to me. I then had to take her downstairs to the radiation people to get the NJ feeding tube replaced. They had to strap her down to a papoose board and shoved that sucker in her little nostril. Oh the screaming!!! She has a miserable life. I do not envy her at all. She's my super hero. When they were all done placing the tube I got to take her home. We finally left Primarys at 4PM. I then dropped her off with my husband and I went and took a test up on campus. When I got back I got to see her grinning again when I walked into the room. I love that smile and I'm so excited that it is coming back! Also, Make A Wish called me today so we're going to start planning her wish! Super excited! Although today was exhausting we had a very good day. Smiling from ear to ear.
Well today was another day in our new found life. We got the much expected grin from ear to ear as Brylee shoved chocolate in her mouth. Thank you to the Easter Bunny for making her happy! She also had a nose bleed today that took 7 minutes to get it to stop bleeding. I called the doctor and they said that she probable had the bleed due to a low platelet count and that if she had another nose bleed today we needed to take her straight to the ER. Also, we need to get a CBC test done tomorrow to see where her blood counts are. Luckily we have not had to make an ER trip yet. The doctor said that if her counts are too low she'll most likely have to get a blood transfusion or some platelets depending on what her numbers look like. I'm super freaked out! It's one more thing that my little girl has to endure that normally she shouldn't have to. It makes me so sad that she has to once again go through something that normal people never have to experience.
We were talking about Easter today and what the day signified. We were discussing that Friday was a horrible day. It was the day our Savior was crucified on the cross and beaten. It was a day full of earth quakes and storms. It was a day full of sadness and sorrow. But Sunday came and it was the day our Savior was risen. It was a day full of glory and thanks. We are currently having many Fridays with this trial of Brylee's. We are baring such heart ache and sorrow. Such sadness and grieving. But there will soon be a Sunday when she gets to rise again and be reunited with us. We will once again be a whole family.
My testimony has grown so much over the past 3 and a half weeks. I've had many mom's private message me about how they have read my story and are now doing everything they can do make the moments count. There are some that have quit their jobs so they can spend more quality time with their children. There have been some that have signed their child up for that extra sport and have made the sacrifice to drive an extra hour to get them there. There have been many that have told me it's been years since they have prayed or thought of our Heavenly Father but they are hitting their knees for my Brylee. There has been so much good come from so much bad already. I can only imagine what the next few months will bring. There has been a scripture coming to my mind all day today. It's 1 Nephi 4:13 "It is better that one man should perish than that a nation should dwindle and perish in unbelief." I know it's not completely in the correct context about Brylee but it makes me have hope that even though she may be suffering right now, that we are all suffering right now, that her life will cause a difference in this world. Her sweet life will bring people to the Lord and cause for them to change their lives and realize what is important. It is better for one little girl to pass than for hundreds of people to pass with no faith. She is bringing faith to this world.
Today has been a really hard day for me and because of that it has been a really hard day for Brylee. I've been really upset and stressed out. Bree can pick that up and she's been really testy today. Any little thing has set her off and she has done nothing but yell and hit. This is completely my fault because my thoughts are else where. So I've come to the conclusion that my thoughts will no longer be else where. I don't care what is going on in the world right now. I am going to put all my focus on my little Brylee because she is the only one that matters right now. It is selfish of me to take myself away from her if only for a few seconds. It saddens me that there are people out there that are so caught up on themselves that they can't spend time with sweet Brylee. I've been thinking all day about how I hurt for those that are going to miss out on Brylee and have so much regret in the years to come because they aren't willing to make those memories with her. But after Brylee's hard day today because I was distracted I've decided that's not my place to worry about that right now. So I'm not going to worry about it. My time is Brylee's time and it will always be about Brylee. She is the one and only in my life right now.
I'm really excited for tomorrow! It's Easter and I'm hoping we'll see another Brylee smile. She is completely obsessed with chocolate and even though the doctor said technically she can't have it because it's a solid food I'm totally planning on breaking the rules and giving her some! I can't wait to see the twinkle in her eyes and that huge grin on her face that I haven't seen in a year.
For those that don't know the week before her MRI we took her to the eye doctor because her eyes were crossing, which was due to the tumor but we had no knowledge of the tumor. The eye doctor told us that she had really horrible eye sight on top of the crossing. He even said that the sight has dropped out of her left eye. He said that she needed glasses. The day before her MRI we finally found an optical place that carried glasses small enough for her tiny little figure and ordered her a cute pair. We finally got them in the mail this week. Today was day number 2 of her wearing them. She keeps crying and saying she is scared when she is wearing them. Can you imagine what it would be like? Having your entire world so blurry and out of focus and thinking that is normal and then putting on these things that make the world completely in focus and everything is so clear and right in your face. I'd be scared too! Although I think she's starting to enjoy it because she didn't fight them today and didn't try to take them off. Progress!
I was so excited today! I love ice cream it is my biggest weakness. When I walked into the room this afternoon with a pint of Ben and Jerry's in my hand Brylee got the biggest freakin smile on her face! I have not seen her smile that big since she was about a year old! I saw teeth and everything! She smiled and said "I want some ice cream!" How can you turn that down? We ate the entire pint of ice cream the whole time she was laughing and smiling. If that's the reaction I get over ice cream 300lbs here I come! I would honestly eat ice cream all day with her just to see that sweet smile that I've been missing so much. I remember last summer calling my mom almost everyday crying because Brylee never smiled. I did crazy amounts of research on toddler depression and mental disorders. I was so desperate to see that smile and I never did. I thought she was miserable! It's almost a relief to know that she truly has been happy all these years. And the even more positive about the smile is that means radiation is shrinking the tumor. The reason she couldn't smile is that the tumor was so big it was putting pressure on specific nerves that control certain parts of the body such as her smile, facial expression muscles in the forehead, chewing muscles, swallow muscles, eye muscles, arm and leg muscles. So now that she is smiling again means that the tumor is shrinking and taking pressure off those specific nerves. I also noticed that she is raising her eyebrows a lot and her right eye now closes all the way. Her eyes aren't crossing in anymore either and her arm is not jerky when she tries to reach for things. She is slowly coming back to me. Hopefully I can get some awesome family pictures in May that show her real smile. I haven't been able to have her smiling in a family picture for a very long time. I would love something that will remind me of that beautiful smile forever.
So I know I had a temper tantrum yesterday and I just have to say that I don't feel guilty about it. I have every right to feel and say what I want to say during this traumatic trial. I have every right to be hurt, angry, sad, fearful, happy, impatient, and loving. I'm hurt that my family is once again going through another trial. I'm angry at Heavenly Father for allowing us to go through this. I'm sad that I'm losing my baby girl. I'm fearful of the future. I'm happy that I know she is leaving so I can make every minute count and get my head around it. I'm impatient because I don't enjoy going through the heartache everyday and I just want this 'cup to pass.' I'm loving for the precious moments I get to have with her and my family. Loving for the support, prayers, help and love from family and friends. Love for my Heavenly Father, that I'm still angry at, for giving me this beautiful girl for a small moment. I'm not the only one who has thrown a temper tantrum. Joseph Smith threw one in D&C 121. When he was in jail he had a moment when he was very angry with Heavenly Father and asked where he was and why he was allowing his saints to go through the nightmare they were in. Jesus Christ threw a very minor temper tantrum in the garden of Gethsemane when he asked Heavenly Father to let this cup pass from him. But just as he did I told Heavenly Father that it wasn't about what I wanted it was about what he wanted for me.
I know that I have offended some people with this blog and with other things I have said and done the past few weeks. My feelings are valid and normal feelings. I have every right to feel how I want and need to. And I have every right to voice them however and where ever I want to. I'm not sorry that I'm a blunt, straight forward kind of person. I've been this way my whole life and I carry my emotions on my sleeve for the whole world to see. I'm not ashamed or embarrassed to share or show how I feel. I hope that in some way it may be able to eventually help someone else down the road. I guarantee that there will be a mom out there that finds herself in my shoes. With all that I'm going through I will be able to help her and tell her that what she is feeling is normal. I don't need rude comments right now telling me that I need to keep certain things to myself. If this blog offends you then stop reading it because it's not changing. This is who I am take it or leave it.
I can't do this anymore! Every day is torture when I have to wake up and see my beautiful little girl and know that her time is going to get cut short. I wish he would just take her and get it over with so I could have closure and move on! I feel like I'm constantly walking on egg shells, never knowing when it'll be over. I try to handle it and be strong but I'm failing miserably! I screamed at the top of my lungs on the way home from school today and started punching my steering wheel. I can't do this. I'm weak and numb. I hate those moments of solitude while I'm driving to and from school because that's when it becomes real again. I scream at god and the world, I tell him to take her away and stop putting me through hell. But then when I get home and see my baby I realize I'm not ready for her to go. I just want the pain to leave. Brylee don't leave me.
It was one of those days today where I just kept crying over and over again. I noticed that Brylee is having some anxiety issues the other day. I talked to the doctor about it today while we were in clinic. The doctor said that is why she is picking her lips till they bleed. It's because her world has been turned upside down and she doesn't understand it anymore. She's been picking her lips, won't go potty in the toilet, won't talk, won't let anyone hold her but me, and only watches one movie. The doctor said that she is regressing back to a time when she felt comfortable. She said to just let her do her thing and she would eventually come back. So I cried the whole time we were talking about that because I feel horrible that she is under that much stress. I cried again when my dear friend told me what her sweet little boy said today. He has Type 1 Diabetes like Bryker and they are friends. My friend was telling her little guy about Brylee and how she is sick in her brain. He got all excited and said she needs to go to the doctor and get a shot in her head and then she'll be better. My friend explained to him that that wouldn't work. He then said I'll sell all my toys and give Brylee the money so she can get better. He then proceeded to pack up all his toys and get ready for a yard sale. As my friend was telling me this story I started crying! It is so sweet that even the littlest person is on Bree's team and is praying for her. I was listening to my Hilary Weeks CD on the way home from school today and once again started crying. I love the first three songs on it. The first song talks about only having today with the one you love and what you would do to cherish today. I'd hold you and listen and I'd let the dishes sit in the sink. I'd tell you I loved you over and over. And for once I"d just let the phone ring. Then I'd remind you of forever and how our love would never change. I'd memorize every detail of your face. I wouldn't let excuses get in the way. If I only had today. This is how I feel about Brylee. I haven't been keeping up on laundry or really doing anything around the house. I've been doing nothing but sitting with her and I'm okay with that. I want to memorize everything about her so I'll never forget it. The next song on the CD talks about making mistakes. I made mistakes today and I'll probably make mistakes tomorrow. I couldn't save myself no matter how I beg or borrow I'm gonna need his grace. I think out of this entire trial this is what I'm most scared about. I'm not okay losing her and have the heart ache right now but I'm so worried I'm going to mess up and never see her again. I know that when she does die she is going to go straight to heaven and live with our Heavenly Father for all eternity. I'm so frightened that, since I'll still be here, I'm going to do something stupid and I won't go to heaven and I'll never get to hold my baby girl again. This is what bothers me most. How am I going to be able to do the rest of my life with that burden on my shoulders? I feel so unworthy. The last and finally song is exactly how I feel today. I believe that everything happens for a reason. We're not just tossed by the wind or left in the hands of fate. But sometimes life sends a storm that's unexpected. And we're forced to face our deepest pain. When I feel the heartache begin to pull me under. I dig my heels in deep and I fight to keep my ground. Still at times the hurt inside grows stronger and there's nothing I can do but let it out. Just let me cry. I know it's hard to see but the pain I feel isn't going away today. Just let me cry Till every tear has fallen. Don't ask when and don't ask why. Just let me cry. Today has been so hard. I do really good for about a week. I can keep it in and be strong for a while but then it just comes pouring out. There are days that I just need to cry.
I was going to be done typing tonight but I just needed to say more. I know that even though Brylee will be leaving us in the near future I know that I will see her again. She will be whole again and perfect because of our Savior. We are celebrating Easter this upcoming Sunday. Easter signifies the death and resurrection of our Savior Jesus Christ. He bled for not only our sins but our sorrows. I know that he feels everything I am feeling right now. He is there to help guide me through this time in my life. He's also there for Brylee. I know she is struggling. I can see that she is unhappy and full of anxiety. She's started picking her lips and every time she cries I ask what's wrong. Her answer is always that she's scared of the doctors. I know that our Savior suffered what we are going through. He knows how she is feeling. He knows how I'm feeling. He also died for us that we might be resurrected. Brylee will be able to come back and live again and be whole, this means no stupid brain tumor!!!! She'll be able to have her chance at a normal childhood. I'll be able to raise her and have a second chance at being her mommy. I have such a testimony in the Lord Jesus Christ. I have felt his atoning blood in so many parts of my life and I get to feel it again right now. I think that's the only thing that is keeping me sane. I know it is true with all my heart. In the name of Jesus Christ. Amen.
So a little in sight on something that might be to private but whatever. Cory, my husband, and I have really been struggling with our relationship lately. Like really really bad to the point where I almost walked away around Christmas. We have started marriage counseling and it's helping. But today really opened my eyes to him and I am very thankful that he is still in my life. I take him for granted sometimes, especially the last few weeks. It seems like all we do is argue but I'm am madly in love with him. Sometimes I'm just too prideful to say thank you or sorry. So this is both of those. Today I made him drive the 3 hours back to our house to get a lot of stuff that we needed. We had only packed enough crap for 2 days when we were scheduled for the MRI. We were not expecting to be up in Salt Lake for 2 months. On his way out the door I said take one of the kids. So of course he took the easy one of the three kids, Bryker. He left me at my mom's house with Byrklee, a very needy 1 year old, and Brylee, my very clingy needy angel. Oh my word talk about a stressful day for me. No matter what I did there was one daughter that was screaming. Brylee wanted me to hold her or sit by her all day long. Byrklee, newly walking, was getting into all kinds of trouble so I was constantly chasing her and taking things away, causing the screaming. Screaming 24/7! Byrklee when I took things away and Brylee when I left her side! Talk about being in two places at once! This is why I'm so thankful for Cory today. He's been doing Byrklee while I do Brylee and it's been a life saver. I have no idea what I'd be doing right now if he wasn't here. I have also decided that him getting laid off in November has been a very odd blessing. It has been such a blessing that he can be here with me and helping and that he doesn't have to miss out on memories with Brylee. I desperately need this kind of support right now. Thanks Babe! Love you!
I'm happy to announce that the day got better! I took a break and ate a piece of cheese cake while my mom listened to Brylee scream. I went back with a much better attitude. And although Bree's attitude did not change I could handle it because mine did. I'm trying to be as positive about this situation as I possibly can be. I don't want my last memories to be awful ones about her being a beast and me constantly yelling. I jut keep remembering that it's her meds that are making her act like this because this is not my normal girl. We will be getting a break from these meds at the end of April and all of May (if the tumor reacts like the doctors want it to). So I just keep telling myself to hang in there. It's only a short while till she's back. I can do this.
However, I do need to just stop tubbing her and combing her hair! She is completely bald on the under part of her neck now. I did have a weak moment of tears. But I finally cut one of her little ringlets to put in a memory book just in case it doesn't come back in perfect little ringlets. Today was definitely a roller coaster of emotions. Usually I can pick out what emotion is more pronounced during the day but today was all over the map!
Ugh!! I'm going to lose it! Brylee has done nothing but whine and yell at me all day long. I'm trying so hard to stay calm and be nice because I know she is most likely miserable right now. But it is taking all my power not to yell back at her. I can't walk into the other room without her yelling at me "Come sit by me right now!" Or yelling at her brother to get out! If she's not yelling at someone she's either crying or whimpering. I ask her what is wrong so maybe I could fix it and all she does is stare at me! She won't even say yes or no when I ask her a question! I just want to punch the wall or go outside and scream at the top of my lungs. I have no idea why I'm losing my patience so much today but really!? I swear if one more person yells at me I'm going to punch them right in the face!!! I'm trying to be compassionate and understanding. And I get it that she is uncomfortable and miserable and is probably frustrated because she doesn't understand what is going on but honestly...Does she have to be this rude?
Will the days get any easier? I feel like I'm constantly crying. Whether it's because of Brylee or something sweet someone said or wrote I feel like I'm always on the verge of tears. It started this morning when I read a very sweet letter from a friend of mine this morning on the way to radiation. Let me be the first one to say that water proof mascara does not work! I was a mess by the time we got to the Huntsman Cancer Center! But the tears did not stop. When we got home from radiation I took the opportunity to put Brylee in the tub since she was already unhooked from all her tubes and wires. I cleaned the tub before I put her in so she didn't get sick or anything. When I got her out there was so much hair in the tub it made my stomach lurch! The tears started flowing again. I took her upstairs all blurry eyed to brush her hair and get her dressed. Gobs and gobs of hair fell out! I started to cry again. I feel like I'm constantly walking a thin line and any small breeze pushes me over the edge. I'm so frustrated with it. I don't want to be weepy but I can't help it. I just love this girl so much and it kills me to see her have to go through this. She is such a miracle though. Every second she is here she teaches me more and more about the love of people on this world. I get so caught up in the awfulness of the world due to my profession that I forget to see the good. She is teaching me so much about faith, endurance, generosity, friendship, and most of all love. I have been so blessed to be this perfect little girl's mother. I feel so inadequate to be her mommy. I'm so prone to just go about my life and not look at the little things. I get lost in the motion of the day and forget to take part in it. I'm learning how to live for the moment. I'm not overlooking the small moments anymore. I'm so blessed to have this little girl in my life even if it is only for a small moment in time.
I had a really hard day today. I guess it started with a weird thought I had this morning. For whatever reason, while I was driving to school, the thought that Brylee wasn't going to be here for Christmas crossed my mind. I'm trying to have faith and hope that she'll last longer than that but for whatever reason I keep having that thought. Of course, me being the teary mom, started bawling my eyes out. It was the start to a very hard day. When I got home from school I noticed that Brylee had pulled her NJ tube out (her feeding tube). This was really horrible because an NJ tube is different from an NG tube. An NG tube goes to the stomach whereas an NJ tube goes to the intestines. In order to place an NJ tube Brylee had to have a serious of xrays to make sure that it goes into the right area. While we were in the xray room Brylee started crying and burrowing her head into my shoulder. I asked her what was wrong. She looked up at me with big round eyes and said she was scared. Of course I started crying again! It's really hard watching her go through all these awful procedures. It hurts my heart that someone so young has to be poked and prodded all the time. She is constantly terrified and clinging to me. I can only imagine having your perfect little world turned upside down and not understanding any of it. My whole heart goes out to her. As I was crying on my way home from school I was listening to Hunter Hayes and his song Cry With You came on. It explains my feelings perfectly!
When you try not to look at me
Scared that I'll see you hurting
You're not hiding anything, no
And frankly it's got me worried
Nobody knows you better than I do
I keep my promises, I'm fighting for you
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry with you, with you
I'm not going any place
I just hate to see you like this
No, I can't make it go away
Oh, but keeping it inside won't fix it
I can't give you every answer that you need
But I wanna hear everything you wanna tell me
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry with you, oh
Yeah, I cry with you
You need love tough enough to count on
So here I am
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry
I mean it when I say
When you cry, I cry with you
I'll cry with Brylee till her tears give out. I'm fighting for her with all my strength. When she cries, I cry. When she is scared, I'm scared. When she is hurting, I hurt. I want to take this away from her but I can't. I feel so helpless.
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.