Beads of Courage

Today, Stacy invited to Julia to come participate in the Beads of Courage program.

This is an art therapy program designed for pediatric oncology and other seriously ill patients.  It affirms children's courage and strength through their countless procedures and trials by giving them a special bead at the completion of each.  This program was lovingly brought to our hospital as part of the legacy of Kate.  It was a moving day to see her family come full circle and bring a piece of Kate's heart and spirit back to the floor.

Many of our beloved doctors and nurse were in attendance.  Have I said lately how much we love these people? They are and always will be family to us.

Every color bead represents a different challenge.. surgery, port access, scans, radiation, therapy, neutropenic isolation, ER visits, etc. And others for the victories... birthdays, end of chemo, acts of courage, etc.

Julia loved stringing her beads and Carter was an eager helper.  They have both already learned what most of the colors represent. One of the favorites is the radiation beads.  They glow in the dark :)

Each child was also given a "Wingman" bead to start their beads.  I read Julia the description...

"This is someone who flies beside you.  It's someone who protects you. It's someone who watches your back when you feel as if you're flying solo. I want you to know that you are not alone and that you've got me as your Wingman.  That's what this bead means.  Not only have you got me, you've got a whole flock of folks on your side.  You've got doctors, nurses, specialists, and of course your amazing family and friends all rooting for you and working side-by-side to help you get well.  So keep this bead close.  Know your team is big and your own strength runs very, very deep.  I'm rooting for you!"

She looked at me and said, "Mommy, Jesus is my Wingman." I couldn't help but cry.

Julia was very proud of her completed beads.  The strand is taller than she is- somewhere around 6-7 feet long.  She was eager to share it with Lina, one of the therapy dogs.

Her favorite bead is her purple heart.  This is a unique glass bead of their choice.  At the end of chemotherapy treatment they receive their purple heart- how fitting. When she was sharing her necklace with Daddy, he asked her what the heart was. She told him.  He said, "Wow, that's a really big heart!" Her reply? "Finishing chemo is a really big job, Daddy."

She also treasures many of her recent beads-  the silver dog bone for pet therapy with Cree, the silver hand for medical play therapy with Ms. Stacy, the courage bead for her recent surgery, the bumpy beads for our tough at-home procedures, the rainbows for our time with KidsPath...

She has been through so much just in the past weeks and to see her receive recognition and take pride in her courage was priceless.

Before leaving, we stopped by the playroom to play with some friends. Here's sweet Haley with her new bling.

I adore this girl and her family! She brings a joy to the floor that you have to experience to believe.  She radiates a force field of positive energy whenever she is in the room.

Carter and Moses had a ball playing "monkey kong" as they call it.  Julia and Rima stuck to puzzles.  As the kids played I sat and talked with Moses' mom.  She was filing out his bead booklet while we chatted.  The crazy part of this is that you can hand these booklets to any cancer mom and they can recall all this information from memory! Two, three, sometimes five years of treatment and it all comes back in an instant. It is just another tangible sign that cancer changes a family forever.

Nurse Diane came in to catch up with us and happily played puzzles with Julia.  They have always been one of her favorite activities, too.  It was a sweet moment to just enjoy the calm and quiet together.  You don't always get these with your health providers.  It's always good to just be people every once and a while instead of patients.

It was amazing to me to see the affect all of this had on Julia.  Her journey has been unique because she began at such a young age. She was only 2 when she was diagnosed with Wilms' tumor.  She didn't fully process what was happening in the beginning.  Sadly, it was the only life she knew.  She doesn't remember her "BC" days (before cancer). As she got older she asked lots of questions and understood procedures and medical terminology way beyond her years.  That's what happens when the preschool you attend is an oncology clinic.

It was an amazing thing to watch as she strung her beads.  She suddenly felt ownership over everything that happened to her.  With each bead, she was telling her story of her journey through cancer.  She has a tangible way to share everything that she's been through over the past two years.  As she walked around the hospital she found new things she wanted to talk about.

The change in her spirit was incredible.  I witnessed it all day, but was absolutely floored when we were back at home tonight.  After dinner I was setting up all her medical supplies for her cesostomy flush, irrigation, suppositories, etc.  Usually Julia starts to cry and plead as soon as she walks in the room and sees the setup.  Tonight she sat down, lifted her shirt, opened her tube, locked in her access, opened the line, put in the syringe, and started pouring in her own solution!!

I was sitting across the room in absolute shock! She looked at me and said, "Mom, I'm ready for my next courage bead for doing my own flush." If that is not a testament to the power of this program I do not know what is!! This is the first time Julia has even been willing to touch her cecostomy button.

Julia has been recovering well.  This week she is moving around much better and feeling healthier all around.  She is still up several times in the middle of the night for several hours at a time.  The past few nights it has been difficult to determine the cause.  Tonight as we talked about our day before bed she said, "My belly really hurts at night.  That's why I can't sleep." I asked her why it only hurts at night.  She said it hurts all day, too- she just tries to ignore it.  Poor Julia.  It's hard sometimes when your kid is tough as nails.  You forget that they are hurting.

Before bed she picked up her beads and said she was taking them to bed with her.  She told us that watching the glow-in-the-dark beads helps her fall asleep and when she wakes up during the night, holding the beads will help her to not be afraid.

Wednesday morning we had back to the hospital to talk with GI.  Dr. Fortunato will be making the plan for how we are going to use Julia's cecostomy.  Right now we are still depending on the stimulant laxatives in addition to the flush.  We need to get her off these drugs and find a safer solution. In the afternoon we are meeting with KidsPath again to discuss Julia's future nursing needs.

Check out the article from the local newspaper.

Click here to watch the video segment on News 14 Carolina.