Chaos

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 27th.
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.