Beads of Courage Celebrating Child Life Month

by CSmith on March 22, 2012

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On behalf of Beads of Courage, Inc.  we want to recognize all of our Beads of Courage Site Coordinators and Ambassadors who are Child Life Specialists! Thank you for everything you do to honor the COURAGE of your families! Thank you for all you do to transform the treatment experience for children coping with serious illnesses. We are honored to know and work with each of you!

Beads of Courage would like to highlight one of our Child Life Specialists, Lauren Sharaby, MS, CCLS. Lauren has been a BOC® Site Coordinator since the early days of Beads of Courage. Thank you Lauren for your commitment to Child Life and the families you support, we treasure you!

I am a Certified Child Life Specialist in the Pediatric Hematology/Oncology inpatient and outpatient units at Stony Brook Long Island Children’s Hospital.  I was hired in November of 2007 and from day one, I pushed to have Beads of Courage instated in our facility.  After a few short months of seeking donations, and persuading my department, I was able to bring this wonderful program to my patients!  We very happily became members of the program in March of 2008 and it took off right away.  Beads of Courage has been a huge part of my work with the pediatric hematology/oncology population, and to date I am proud to say, I have 50 patients participating.

It’s hard to say in such a short paragraph what I love about Beads of Courage, because really, what’s not to love? I love how my patients come running in asking for their beads, before they even get their jackets off. I love that my patients can go back to school and voice to their friends what they’ve been through while they were out.  I love how something as simple as beads can open up a conversation to a child or parent or sibling that has totally shut down.  I love the fact that Beads of Courage helps facilitate social interactions between patients going through similar, but not quite the same therapies.  I love how the parents of my patients cherish these beads long after their child’s therapy has been completed or after they have lost a child.

I can go on for quite some time about why I love Beads of Courage, but the main reason is, because the therapeutic value of this program truly helps my patients and families cope with the unimaginable.  The kids look forward to earning their beads. It teaches them strength, courage, and much more.  It highlights challenges, milestones and achievements that deserve to be recognized; and it is something that every patient and family will treasure forever.

Phoenix Children’s Hospital – Phoenix, AZ

Amanda Lopez, Jamie Day, Chantelle Johnson, Jody Moses, Wendy Pauker, & Jennifer Fleming, & Sarah Maurer

Cardon Children’s Hospital- Mesa, AZ

Kelly Lind, & Sarah Jones

Diamond Children’s Medical Center – Tucson, AZ

Amy Rothenberg, Chelsea Hodges-Caratachea, Kristen Kidder, & Allison Woods

Ryan’s House- Phoenix AZ

Kristen Bakaliz & Jenni Rogers

Kaiser Permanente Sacramento-Roseville, CA

Cammie Woodward & Traci Aoki

University of California Davis- Sacramento, CA

Amber Hall & Diana Sundberg

Sutter Medical Center- Sacramento, CA

Mariela Magnan, Amy Medovoy, & Tracy Auble

City of Hope National Medical Center- Duarte, CA

Marisol Trujillo & Jo Ann Namm

Kaiser Oakland- Oakland, CA

Gina Mackintosh & Carla De Lemos

Lucile Packard Children’s Hospital at Stanford- Palo Alto, CA

Colette Case

Santa Barbara Cottage Hospital- Santa Barbara CA

Jaynie Wood

Kaiser Permanente, Santa Clara- Santa Clara, CA

Emily Heffelfinger

Rady Children’s Hospital- San Diego, CA

Andrea Frenken

Ventura County Medical Center – Ventura, CA

Belinda Hammon

The Children’s Hospital- Aurora, CO

Allison Donohue, Natalie Fyles, & Amanda Honeyman

Memorial Hospital for Children- Colorado Springs, CO

Jeri Young

Nemours/The Alfred I duPont Hospital for Children- Wilmington, DE

Cathy Aikens

Wolfson Children’s Hospital- Jacksonville, FL

Earlene Mclendon

Joe DiMaggio Children’s Hospital- Hollywood FL

Shannon Mccarthy

Florida Hospital for Children- Orlando, FL

Debbie Norris Spencer & Meagan Krizek-Fonseca

Children’s Healthcare of Atlanta at Egleston- Atlanta, GA

Stephanie Kruse Dill

Backus Children’s Hospital at MHUMC- Savannah, GA

Annie Hitt

Children’s Hospital at The Medical Center of Central Georgia- Macon, GA

Abby Davidson

Kapiolani Medical Center for Women and Children- Honolulu, HI

Ashley Sutherland & Michelle Jackson

Kaiser Permanente- Honolulu, HI

Geila Fukumitsu

Children’s Memorial Hospital- Chicago, IL

Noe Mojica & Julie Pierami

Comer Children’s Hospital at the University of Chicago- Chicago, IL

Jenn Loewy & Anne Boswell

Advocate Hope Children’s Hospital- Oaklawn, IL

Lisa Boland

Central DuPage Hospital- Winfield, IL

Trina Krischon

University of Kentucky Children’s Hospital- Lexington, KY

Meredith Edens

Women’s and Children’s Hospital of Lafayette- Lafayette, LA

Janie Eldridge

Children’s Hospital New Orleans- New Orleans, LA

Kristin Haugen

Eastern Maine Medical Center- Bangor, ME

Renee Wyatt, Amy Baker, & Betsy Philbrick

Children’s Hospital of Michigan- Detroit, MI

Deanna Scanlon &, Mary Kraft

Hurley Medical Center – Flint, MI

Lori Newton

Children’s Hospitals and Clinics of Minnesota – St. Paul, MN

Jodi Betsinger & Sarah Magnuson

University of MN Amplatz Children’s Hospital- Minneapolis, MN

Laura Sufka, Emily Trester, & Sara Wagner

St. Mary’s Children’s Hospital- Duluth, MN

Heidi Lundquist & JoHannah Orman

Mayo Clinic- Rochester, MN

Jennifer Rose

MU Women’s and Children’s Hospital- Columbia, MO

Angie Ball, & LeAnn Reeder

Renown Medical Center- Reno, NV

Angie Mcevers

Children’s Hospital of New Mexico – Albuquerque, NM

Amy Funk-Herrera

Hassenfeld Children’s Center for Cancer and Blood Disorders- New York, NY

Shifra Hoffman

Albany Medical Center- Albany, NY

Natalie Mahler

The Children’s Hospital at Montefiore- Bronx, NY

Madeline Ureña

Morgan Stanley Children’s Hospital- New York, NY

Alison Hefer

Stony Brook University Center- Stony Brook, NY

Lauren Sharaby

Golisano Children’s Hospital at Upstate Medical University- Syracuse, NY

Brittany Metcalf & Margaret Nellis

New York Presbyterian Hospital- New York, NY

Courtney Czepiga & Lauren Kaiser

Children’s Hospital of Eastern Carolina Pitt County Memorial- Greenville, NC

Jacque Sauls & Courtney Johnston

Duke Children’s Hospital and Health Center- Durham, NC

Molly Bain, Michelle Ashford, & Carolyn Schneiders

UNC Hospitals- Chapel Hill, NC

Jessica Irven

Brenner Children’s Hospital- Winston-Salem, NC

Stacy Peterson

Presbyterian Hemby Children’s Hospital- Charlotte NC

Elizabeth C. Gray

Cincinnati Children’s Hospital and Medical Center- Cincinnati, OH

Lisa Duggan, Anne Trauten, Karen M. Martin, & Courtney Osborn

The Children’s Hospital at Saint Francis- Tulsa, OK

Sarah Sands & Miranda Ruland

The Children’s Hospital at OU Medical Center- Oklahoma City, OK

Kristen Holmes

Children’s Hospital of Pittsburgh- Pittsburgh, PA

Elizabeth (Williams) Moneck, Laura McCullough, & Lindsay Gruber, Michael Shulock

Children’s Hospital of Philadelphia- Philadelphia, PA

Sherry Polise & Katrina Mingos

Janet Weis Children’s Hospital- Danville PA

Stephanie Davis, Tracy Craddock, & Rebecca Drumheller

Greenville Memorial Hospital, – Greenville, SC

Jamie Gibson

TC Thompson Children’s Hospital- Chattanooga, TN

Ashley Williams

Niswonger Children’s Hospital- Johnson City, TN

Marinda McConnell & Justine Jordan

Vanderbilt Children’s Hospital- Nashville, TN

Sara Reynolds

Medical City Children’s Hospital- Dallas, TX

Amy Browning Fisher, Brittany Blake,  & Margarita Rosas

Dell Children’s Hospital- Austin, TX

Cindy Fitchpatrick

The Children’s Hospital at Providence- El Paso, TX

Peggy Schuster & Ana Aburto

Methodist Children’s Hospital of South Texas- San Antonio, TX

Jennifer A. Hipsley, & Kaela Brendler

Children’s Medical Center of Dallas- Dallas, TX

Yvette Tyler, Ruthie Davis

Cook Children’s Hospital- Fort Worth, TX

Katie Campbell

Parkland Medical Center- Dallas, Tx

Meredith Long, Molly Tanner, & Jolyn Schmerse

Charleston Area Medical Center for Women and Children- Charleston, WV

Christi Bissett

WVU Children’s Hospital- Morgantown, WV

Katie Huggins

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Every Bead of Courage tells a story of strength, honor and hope. Each collection of beads has a unique one-of-a-kind story to tell. Words cannot express how truly thankful we are at Beads of Courage to be able to provide a way for children and families coping with serious illness to RECORD, TELL and OWN their story of COURAGE! We are honored to partner with hundreds of Beads of Courage Ambassadors around the world that honor and acknowledge the courageous children and families that are part of the Beads of Courage Cooperative Group.

We believe in storytelling. We believe that sharing each of our own unique life stories allows healing to happen. Sharing our story helps us to cope and own what we have been through, not only is it healing for ourselves, but often for those who are reading or listening as well.

We look forward to sharing many of our member’s stories with you this year, without further ado…

Eva Ann’s Story

Written by Anya, Eva Ann’s mother

As my family and I celebrate Eva’s first birthday, I am able to look back, appreciate, and value things I did not while living through the pain. Eva Ann was born January 28th, 2011 weighing just over a pound.

Eva Ann 1 month old

As our journey began, the doctors told us to love on our daughter, and spend a few short hours with her. They told us she would not live past eight hours, and there was nothing more they could do.  Eva survived the eight hours she was given to live, and decided to stay a while.  After the first 24 hours, doctors began telling us that we would need to consider her quality of life – saying that just because Eva had made it through did not mean she would ever “live”. My husband and I knew that we could never let our baby girl go – so we let Eva decide.  If she could fight to stay with us, we would fight to help her have that opportunity.  Days turned into weeks, and weeks into months.  Our little girl was still alive. She was holding on, through trials and tribulation.  Each day we had Eva was one day closer to bringing our girl home.

Eva continued to fight, and after four months she came home on oxygen and a heart monitor. She weighed four pounds, eleven ounces when we brought her home.

Unfortunately, this excitement quickly faded. After being home for just over a week, Eva was flown to Children’s Hospital of Pittsburgh.  This is where another 5 month neonatal intensive care unit (NICU) stay would begin.  Eva had an incompetent airway and it caused her to go into respiratory arrest three times in one week. Eva over her 5 month stay received a tracheotomy tube, two feeding tubes, and underwent numerous surgeries/ procedures. When Eva received her trach, it seemed like all the months of hard work had failed, as if we had failed her. However, this was exactly what Miss Eva needed. This allowed her to breathe easily- so she could spend more energy on growing and getting stronger. After five months at yet another NICU, we took our girl home again. This time she weighed eight pounds, four ounces, and came home with a trach and a G-I tube.

We received our Beads of Courage during this stay in Pittsburgh.  When Eva received her trach, we were so afraid of the scars and”abnormal” marks.  At this point Eva had spent almost her whole first year of life in a NICU. She was not like the other one year old children we met. She was “different”, and we wondered how we would we explain that to a child.

Photo Credit Dawn Beiry

Eva’s Beads of Courage have helped our family explain these things to Eva, her younger friends and family members, and even strangers. They help us illustrate just how much she has been through. Each bead represents something Eva was able to endure and overcome, with all odds against her. Eva’s beads hang so proudly in our home, and she plays with them each day.

I know that as Eva grows and ages she will wear her beads with pride and show them off.  The beads are what and how we teach Eva about each path in her journey, and they all mean so much.  My husband and I are so grateful for her Beads of Courage, they will allow Eva to explain her scars, and her differences with something beautiful to show for it all – beads. To our miracle girl, Beads of Courage not only represent her courage but they show how far a little girl has gone to beat all odds  ~Anya, Eva Ann’s mama

Anya, thank you for sharing your story and to Eva Ann, HAPPY BIRTHDAY beautiful girl!

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The Perfect Bead

January 16, 2012

I love how the perfect bead seems to find the perfect strand. Hi there, this is Ashley, Communications Director for Beads of Courage. I have a wonderful story to share and I hope you can help me as well. I’m looking for the Artist who made this bead (the blue one with the flower and […]

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