Thursday, May 17, 2012

Thursday Night Update

Briley's had a terrible day.  First it was the low ANC.  They gave her a shot that is suppose to put her bone marrow into overdrive.  She's never had that before.  Usually only high risk leukemia & solid tumor patients get it.  A side effect is bone pain.  She's hurt & cried throughout the day. There were only short periods of time after her pain meds that she felt alright, but those were few & far between.  The pain meds are making her constipated.  She spent a lot of time on the potty trying.  She even feel asleep on it at one point!  Finally the meds worked!  Then we gave her a sponge bath and tilted the wheel chair back over the bath tub and washed her hair.  She felt pretty dang good after all of that.  That was my chance to head to Seymour.  But..........
We got back to the room for supper after being in the playroom.  She started feeling bad again & hurting.  She's running a fever, again........
I know how hard it is to be by yourself with her right now.  It takes two people to do a lot of things since she's got to be moved a certain way in a certain position.  It will be a lot easier for everyone if I stay here tonight to help out since she's been hurting so bad and running a temp.  I guess I will try to head back home tomorrow morning after we see the doctor.  
I think that I got the car insurance stuff figured out and sent off.  Alicia and I were talking about how we can even leave Briley behind for a day to find another vehicle.  Hopefully we'll get into a routine at some point and things will come a little easier.
I applaude parents that have wheelchair bound kids.  I don't know how they do it!
I don't know why she's running temp or why it's taking so long for her ANC to recover.  Yeah, because her bone marrow has been traumatized, but everyone seems a little surprised that it's taking this long to recover.  
We found out today that a downs kid from Wichita was diagnosed with Leukemia yesterday.  They are here at Cooks.  I've walked by their room several times today, but I haven't seen anyone.  Anyway, say an extra prayer for that family!
I know that I've said this many times before, but Briley is a long ways from being out of the woods.  Please keep her in your thoughts and prayers, along with the rest of us as our patience is being tested.


  1. We are all praying so hard for all of you. Please know that you are not alone in this. We think of you all so many times each day and pray for you and Briley and Alicia and her family. This is going to get better! There are so many people here who would do anything to help! We love you all. Hang in there.
    Kelly, Reno, Alyssa and Morgan

  2. Your family is continually being prayed for. Don't ever doubt it. God bless your family.

  3. i love u briley and i cant wait to see u i miss u

    ~ layni <3 <3 <3 <3 <3

  4. I hate to hear that Briley had such a rough day. I pray that tomorrow will be the opposite! We are praying hard for you all.

  5. I was just reading your blog. I saw it on JoAnne Knezek's fb page. I know it's been a long time, John, but you went to school with Jason and I. My heart goes out to you and your family. Your daughter is definately a warrior. I will be praying for you all. I'm firmly believing for a complete recovery, in God's name.
    Stacy (Tinney) Needham

  6. Praying vigilantly for you all. God bless you!

  7. I hope you know that you are being prayed for constantly by more people than you know. I heard about Briley's illness and accident here in Artesia, New Mexico and have shared it with friends and family and have been praying for you all continuously....What a brave, courageous little princess and family. I just ordered my Team Briley T-shirts and bracelets, which will lead to more questions and people to pray for Briley. I will coninue to check your blog to get updates. I got your mailing address to send Miss Briley a card and gift. My thoughts and prayers are with you all!!!!

  8. My son went to school with Nathan Herring was so sorry to hear about your daughter I know that there are prayers going out for briley from Farmington New Mexico and also Douglas Wyoming!! I will keep her in my prayers for a healthy recovery!! God Bless You and Be With you in the days ahead!!!


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