In 2004, a pediatric oncology nurse, named Jean Baruch, was looking for a way to help children deal with the emotional effects of serious and life-threatening illnesses. She developed a program called Beads of Courage. Begun in Arizona, the program now supports over 10,000 children in 60 hospitals around the world.
The mission of the Beads of Courage program is to use art as a way for children to track and celebrate their journey through illness and to provide a reminder to the child of what they have already overcome when facing a difficult procedure.
For every step of a child’s medical journey, from an x-ray to a radiation treatment, they receive a color-coded bead to add to their string. Children often amass 10 to 35 feet of beads! And through their strand of beads, they can tell the story of their courage on the road to recovery.
The Child Life Specialist at U.C. Davis introduced Emily to the Beads of Courage program and over the past four weeks, Emily has begun collecting her own strand of beads, representing every blood draw, surgery, and night in the hospital (seen below).
Emily’s strand begins with her nickname: Stitch. Christina felt this name was important to use because it is Emily’s feisty attitude that the doctors have continually commented will be one of her greatest assets on the difficult road ahead. The bulk of her strand is comprised of small beads representing her treatment: white for chemotherapy, black for any needle pokes, red for blood transfusions, green for fevers or neutropenia, yellow for a night in the hospital, and so on.
She also has a few special beads. The large black bumpy bead (right after her name) represents her mobility challenge. Emily’s refusal to walk was one of the first indications that something was not right. After more than a month off her feet, it is likely Emily will have to re-learn how to walk at some point in the future when her strength and spirit recover. The blue star represents surgery for her bone marrow biopsy. The music note was given to her for participating in music therapy at the hospital. The rainbow bead is given for Care Team Visits with the Child Life Specialist. The silver bumpy bead represents a medication challenge – in this case, given after Mom and Aunt Elisabeth were unable to get Emily to take medications the first time she was released home.
The silver duck bead is called the Wingman bead. Sponsored by the insurance company, Aflac, this bead was given to Emily with special purpose by her Child Life Specialist who has been impressed by the incredible support Emily has from family and friends. The note explaining the bead says this:
Wingman is someone who flies beside you. It is someone who protects you. It’s someone who watches your back when you feel as if you are flying solo. I want you to know that you are not alone, and that you’ve got me as your Wingman. That is what this bead means. Keep the Wingman Bead close, and know that your own strength runs very, very deep.
After the Wingman bead, comes a large blue & green glass bead that holds a very special significance for the family. This bead was given as a part of a program in which individuals wear the beads during marathons and races before donating them to the children as symbols of the strength and endurance needed to fight serious illness.
Emily’s glass bead was worn by a man in Oklahoma, a cancer survivor himself, who ran a race called the Warrior Dash. The Warrior Dash is a crazy 3-mile run that includes hurdles, obstacles, and physical challenges that would frighten the toughest Marine! Runners climb vertical walls, crawl through mud pits, and leap over fire! Emily’s bead wearer chose this event because it was the hardest event he had heard of and therefore the best way to honor the courage she’s shown in her battle.
Enclosed with his bead were pictures of him before and after the race wearing the bead, his medal, and a note that said, “I hope someday in the future, at another Warrior Dash Race, you will be running with me, a fellow cancer survivor. Until then, I am giving you the medal I won, for YOU are the real “Warrior”.”
The honor this man gave, not just by wearing a bead, but by his thoughtfulness and encouragement to a child he’s never met, are incredibly uplifting. And part of what makes this story even more incredible and personal, is that Emily’s Grammie Genie and Aunt Gaby ran the very same event in Holister, CA this past fall. Just a month apart, and across the country, three Warriors made brave journeys that now stand as incredible symbols of the courage and strength of Emily Love as she becomes a real life “Warrior”.
Emily’s strand of beads has already grown beyond what’s seen in the picture above. Every day, she undergoes medical milestones that will be recorded with beads to symbolize the immense courage she shows in the face of her pain and discomfort. In the months ahead, Emily’s beads will be reminders that she can overcome any test or procedure because she has already survived so much. And someday, years in the future, Emily will have this strand of beads as a tool to tell the story of her courage in her fight against Leukemia.