Tuesday, June 17, 2014

Examples of Hope

Photo: Edie's origami  cranes from Weston and Mrs Prendergast's 4th grade class.  Nurses, Doctors and all kinds of hospital staff loved seeing these. Many people chocked up hearing about the Rendezvous 4th and 5th graders helping Weston make 1000 cranes to give to Edie to help her heal.  Thank you Rendezvous students, teachers and staff!
XOXOXO from UT
Weston Barnes'  mom and baby sister.
Cara and Edie
 
Edie's origami cranes from Weston, her older brother, and Mrs Prendergast's 4th grade class. Nurses, Doctors and all kinds of hospital staff loved seeing these. Many people chocked up hearing about the Rendezvous 4th and 5th graders helping Weston make 1000 cranes to give to Edie to help her heal.
 
Sadie Packer's photo.

These cute boys wanted to support their cousin clear across the country, so they cut their hair in honor of Edie. To read their story click here


Benefit Concert

Photo: WITH LOVE!
From PCMC
XOXO OXO
Cara and Edie


Edie's family, especially her cousin Evan, have organized a benefit concert to honor her and help raise money to help her family during this time.

We would love for everyone to come. It is a free concert, but donations would be appreciated. Local businesses have graciously donated services and products to go towards this benefit.

There is an official facebook page to keep everyone posted - click here

Edie's Story

Photo: 5-21-14
We have now read our personal library...at least a dozen times.  Can't wait for Aunt Kristy to come home from Chicago so she can bring books from  her Library.  :)  We are on day 7 of our 21 days. She had all of her chemo and the steroid in the first 6 days.  Her ANC, (a number that kinda rules our lives right now) is artificially high due to the steroid but will plummet any day now and then we will be here till it is recovered.  "Count recovery" they call our stay here for these 21 days.  
My mom and Hans came to visit yesterday for a few hours.  It was great to see them.  Hans and I had lunch together (yummy), and mom held Edie for hours.  Thanks for coming to visit.  Our family is coming this weekend!  Yea!  We are both so excited!  
We at least have a nice view out our window.  I see folks riding their bikes and hiking the trails all day, everyday.  One of these days I want to go for a walk up there. 
•••ATTENTION•••
We are looking for a nanny!  Someone who can work with Ruby.  A nanny for the three kids for at least 3, perhaps 4 days a week.  Pay, summer pool pass at Targhee, vehicle for driving kids around and gas will be provided. Please call if you are interested or pass this info on to someone who might be interested.  I need your help!!!!
Cara 208-709-4674
We love you all and are so grateful for your love and support.  We couldn't be doing what we are doing without you...all!  Thank you, thank you, thank you!  Please keep Edie and her family in your prayers.  
XOXOXO from PCMC
Cara and Edie
 
This little angel's life changed starting in 2014. I could rewrite her story, but Jason Suder from the Teton Valley News articulated it so well in this article. click here
 
Rod and Cara Barnes Family
 
Photo: 4-16-14
We have been in UT for 8 weeks.  I remember day 2 at PCMC, a Doctor (a Fellow) telling us "you could go home in about 3 days."  Wow, he was off...by just a little!  Edie is in her 3rd week of this 4 week round if chemo.  She will then have a bit of a rest to get her blood counts back up and then into the hospital we go...for 3 months!  
Edie is doing much better ever since we started feeding her by a pump.  The NG tube is the one that goes through her nose and into her stomach.  She is still really not eating, but is getting  500 calories through her feeds.  She may get 525 calories per day.  Woowoo! Don't worry, I am eating her extra calories! :) 
Love you all very much!  Thank you for helping wherever help is needed, even without being asked.  We so appreciate everything!
XOXOXO from UT!
Cara and Edie
Edie and her mom, Cara

Photo: 3-15-14
Rod is hear! Yea!  Again, Edie will not take her arms from around Rod's neck.  She has missed him do much.  Edie is finishing her 1st round of chemo.  The next round is going to be brutal.  But for now, she has her daddy! 
Love to you all out there .  
XOXO
Cara, Rod, and Edie
Edie and her Dad, Rod
Photo: 4-8-14
Kristy and Edie have a nail party a few times a week .  Edie likes to have pretty nails to show her oncologist, Dr Raetz, who likes pink nails too.  This is a high lite to our week.  It is nice to have a little pink in between chemos! She is feeling kind of spunky right now.  I am glad to see this.  She will be needing a blood transfusion tomorrow along with her chemo.  We are getting our timing figured out so she is not nauseous and unable to hold her medicine down. That took a few days.  Glad for a sweet girl who forgives her mother for trial and error at the beginning of each round of chemo. 
Love to all of you!  Thank you for keeping my family loved, fed, taken care of, driven to and from where they need to be, giving of your time and money and most of all your friendship.  
XOXOXO from UT
Cara and Edie
Edie and Aunt Kristy doing their weekly manicures

 



Hope for Edie

 
Dear friends and family,

I have the opportunity to attend church with four year-olds for two hours straight each Sunday. In our church, we call these little gems 'Sunbeams', and they happen to be just a little older than Edie. Oh boy, they are full of sunshine. They love to chat, wiggle, get drinks from the drinking fountain, go to the potty, help out, do puzzles, and eat snacks. They also love to learn about how our Heavenly Father loves us. We often learn this simple, perfect message through songs. We are currently working on learning a song called, "The Family is of God" by Matthew Neeley.


Our Father has a family. It’s me!

It’s you, all others too: we are His children.

He sent each one of us to earth, through birth,

To live and learn here in families.
 
God gave us families to help us become what He wants us to be—
This is how He shares His love, for the family is of God.
 
I wish you could hear several young children sing this with a conviction that makes me pause every time I hear it. I know its message is true. To me, this song summarizes why we have hope for Edie and her family. She is part of our family, and we love her. She is helping us to become what our Heavenly Father wants us to be. We want to help her become what Heavenly Father wants her to be. Maybe she can become a wiggly 'Sunbeam' one day soon.
 
We have been touched by her and the countless others that make up the pages in her incredible story. We sincerely wish that you feel the power of hope and recognize that this is our way to share Our love.
 
Respectfully,
 
Alisa Reynolds (Edie's cousin)
 
 
Photo: 5-7-14
Edie is helping change her clave.  She really loves to participate in her care.  
Lots of fluid, blood, and antibiotic over night in PCMC and they sent us home.  They want us to rest up at Kristy's home before we COME HOME TOMORROW! :). Yea!  we get to come home for the weekend.  I was so worried about coming home because she just wasn't doing well enough. She is still not super energetic, she has no immunity, she is on a massive amount of antibiotic, but she will really enjoy seeing her family and loved ones and our home. After all, she is plumb full of fresh new blood! :)
We will need to be back for clinic on Monday 12:00 noon.  Hopefully her numbers will be high enough to go right into the hospital for our 1st 21 day block in PCMC.  I have a feeling she won't be ready by Monday though.  We'll go in whenever she is ready.
I can't wait to be home for a couple days!
XOXOXO from Murray UT
Cara and Edie