Thursday, May 19, 2016

Day 19: Beads of Courage

Beads of Courage is a very cool program that helps children record, tell, and own their stories of treatment through beads. For every medical thing Tillery experiences, she earns a bead. Her story is told through 622 beads.

Tillery was diagnosed 20 months ago, averaging 31 beads a month. That’s over 1 bead per day since diagnosis! Tillery’s current schedule is that she earns a bead every Monday for a finger “poke” and on Wednesday’s she earns 3 beads: 1 poke, 1 clinic visit, 1 chemo.

Some beads come easier than others. When Tillery gets poked these days, it doesn’t phase her. She almost always gets a sticker afterwards and usually talk of Mickey Mouse happens during the poke. Of course, this wasn’t always the case. When Tillery had her blood clot and they were adjusting her level of medication, she had to have a fresh poke every hour and sometimes they didn’t get enough blood and had to poke twice. And when she first got her port, she had so much anxiety over access that she would vomit and we had to medicate her.

The hardest beads for Tillery are for the dressing change. The dressing is the “sticker” that covers her port access, PICC access, or surgical dressing. To change the dressing, it takes a few nurses plus a parent to hold down Tillery while someone very slowly and meticulously pulls a giant, super sticky bandage off of her very sensitive skin. Tillery is so sensitive she develops a rash around the bandage and that is aggravated during the dressing change. If the dressing is removed too quickly, it can tear the skin or pull out the line that it’s holding in place. We have found nothing that comforts her during a dressing change, just encouraging that she’s doing great and it will be over soon and we will hold her.

The hardest beads for mom and dad have been some of the ER beads, some blood transfusions, and the surgeries. It’s also hard for us to look at all strands together and see the story of courage that our daughter has developed through horribly unfair trials she has endured. No one should have this many beads.

At Cincinnati Children’s, Beads of Courage is sponsored by The Dragonfly Foundation. At East Tennessee Children’s, Beads of Courage is sponsored by Jewelry TV. Thank you for your support.

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