Saturday, May 12, 2012

Saturday Morning Update

It is Saturday isn't it?  Briley started running a fever last night.  Of course, being that she is a cancer patient, fevers scare us.  Briley is on the trauma floor, so the nurses & nurse prac are not familiar with Briley's leukemia situation.  Alicia asked several times for her port to be accessed and antibiotics started.  She was being denied.
Briley's fever kept rising.  Finally the Oncology doc was paged up and guess what he wanted to do?  They accessed her port and started her on antibiotics.  They even sent a nurse from the Oncology floor up to the trauma floor to be Briley's nurse for the day!  We are very happy about that.  
We've been in this situation before, especially down in the ER.  It's almost like everyone is scared to mess with a cancer kid.  But I understand why.  It's a specialty treatment plan design specifically for each individual child.  And I know that they need the docs permission before doing certain things, but what they all need to understand is that us parents understand what needs to be done with our cancer kid more-so than any nurse outside of the oncology world.  It's sometimes frustrating that certain people, not all of them, but some people get initials behind their name and think they know better than us parents who have been living this battle for the past year & 4 months.  Especially the nurse prac on this floor.  All it takes is a simple call to the on-call Oncology doc.
And guess what?  Her temp has been going down since the start of antibiotics!  
Alicia said that Briley rested on & off last night, but was not to bad. Briley is still hurting pretty bad this morning.  The braces are very tight on her legs and with the swelling is making it very uncomfortable for her.  The foley cath is also causing her some issues.  Her belly is distended and they will give her some laxatives to help her poop.  They tried to remove the neck collar last night, but Briley had some soreness, so they left it on.   They said she could possibly have some ligament/tendon damage.  She will either have a MRI on her neck or she will have to leave that dang thing on for 6 weeks, or both.
Her ANC (infection fighter) & her hemoglobin is down a little.  She may get another blood transfusion.  She also had a platelet transfusion last night and those counts are looking good this morning.  
We hope that they will let her sit up in the bed today!  It sounds like she will be here until Tuesday at the earliest.  At some point, she will go to a therapy session to learn about using a bed pan, riding in a wheel chair, sponge baths, so forth.  At some point, the child life specialist will sit down with Briley & maybe Bryson and talk about Nana and why they will no longer be able to see her.  It's wonderful that they do things like that.  It's been tough on all of us that she's gone.  Bryson has already been asking where Nana is.  
They have stopped her chemo until Monday at the earliest.  So in the back of our minds we are worried about relapse.  We also don't know if this will kick her off of the research trial and put her back on standard protocol.  God I hope not.
I would give anything to trade places with her.  I've been saying that since two January's ago.  This little girl has been through more crap than I ever thought possible.  But she is still here with us!  That's the main thing.  She & we will get through this.  
This blog was viewed 1,800 times since the accident Thursday night.  We truly appreciate everyone's kind messages, thoughts, and prayers.  I'm sorry that I have not sent everyone back a message or text.  Please understand that they are greatly appreciated and know that we do read them all.  Please continue to pray for Briley's healing and also pray for Glenn, Ruth, Nathan, Alicia, & Jessica and all of Gloria's grandkids that they may somehow find comfort.  


  1. Thanks for the update, you and your family were the first thing i thought about this morning, hoping and praying you all got some sleep.
    With love angela wright

  2. Lifting you up in prayer.....I don't understand why things happen in families like this, multiple things....we too have been effected by cancer in our child. Just know that the good Lord is there, never leaving you all's family and I will be pounding in prayer on Heavens doors for complete peace, understanding, mercy and healing! Lots of love, Rachael

  3. We may not know your plan, Yayweh (God), but we know you have one. Help us find comfort in knowing you are in control.

  4. Doesn't matter how many times I see this picture, I bust out crying every time. I can't seem to do anything b/c I can't complete a thought, which only makes me realize if I'm like this, how on earth are y'all functioning at all? But God gives you strength when you need it and I know He is with you all the way. The devil is trying so hard to test you and break you, but he needs to go ahead and realize it isn't going to happen! People are asking for more Team Briley tshirts and bracelets. You've been on the news. Everyone has been asking people to pray for you from far and near, so many who don't know you at all. The Smokey Bros simply says TEAM BRILEY. Tons of churches have y'all on their prayer list. I feel sure there are prayers on your behalf 24/7! You are in everyone's thoughts and hearts. I will come to FW and stay with Briley Monday if I need to, altho I'm assuming Trina is probably doing that, but let me know if I can do that to help you, or anything else. I am so grateful for your updates and Alicia's on fb as well. Much love to all of you.

  5. Good Evening:

    Hope things are calming down. How too well we understand the frustration at times in the medical world. Keep avocating on her behalf, you do know her better than anyone else.

    The chemo and steroids both are tremendously hard on bones and density issues. Be prepared that the healing process can take longer as well.

    But Briley does have a Special TEAM supporting her all the way. Alisha sums it up best with her quote on fb saying when Satan knocks at the door, just say, "Jesus, would you get that for me?"

    Gary and Jeanne'


Thank you for your thoughts & prayers for Briley! God Bless!