Since birth, Ollie Green has been poked, prodded, infused and transfused countless times. Diagnosed in the womb with sickle cell anemia, the now 16-year-old is facing a bone marrow transplant. Trying to explain to others what he’s been through is difficult for him to put into words. But now, he has a tangible way to express himself – through his Beads of Courage.

“It makes it easier for him to share with someone else about sickle cell, especially people his age,” said his mother, Tanya Green. “They don’t understand when he says he had a blood transfusion or got stuck 20 times. But, if they see a bead, they know what it’s for.”

Beads of Courage® offers pediatric patients with chronic conditions a means of tracking their progress after diagnosis. Each bead is a different color or shape and represents milestones, procedures and acts of bravery during a child’s treatment. For example, a child earns a beige bead for a biopsy, joint aspiration or injection; white for chemotherapy or immunization; blue for doctors’ visits; star for surgery; yellow for overnight hospital stays; black for needle pokes from IV or blood draws; glow-in-the-dark for radiation treatments; red for transfusions, and bumpy for a bump in the road (setback).

Patients also earn hand-made courage beads for overcoming a challenge, whether that be getting up and walking to the play room or swallowing a horse pill. When reaching a milestone, like completing oncology treatment, children receive a special purple heart.

In just three months after enrolling in the program at Women’s & Children’s Hospital in Lafayette, La., Ollie he has garnered over 250 beads on five strands. Some of these were “catch up” beads from his more than 70 blood transfusions, numerous surgeries and countless pokes at Women’s & Children’s alone. He earned courage beads after he was given the wrong blood, was picked up from school in an ambulance and was interviewed on television.

The program started when Jean Baruch, a pediatric oncology nurse in Phoenix, Az., was trying to find a way to help her young cancer patients address their emotional needs. While working at one of Paul Newman’s Hole in the Wall Gang summer camps for children and families with serious illnesses, she noticed that campers especially enjoyed beading. Hoping to share that experience with cancer patients in hospitals, she launched Beads of Courage® in 2004. The program is available for children with cancer and blood disorders, cardiac conditions, burn injuries and other chronic illnesses. Since its inception, Beads of Courage® has gone global, with more than 90 hospitals in the US, Japan, New Zealand and Ireland now enrolled in the nonprofit.

Women’s and Children’s, a campus of The Regional Medical Center of Acadiana, piloted the project last fall, becoming only the second program in the state. The other Beads of Courage® program is at New Orleans Children’s Hospital. “It is a way for children to journal their personalized experience that they’ve had while they’ve been chronically ill,” explained Kendra E. Craft, RN, MSN, FNP and director of PICU and pediatrics at Women’s & Children’s.

Acadiana’s program currently has 12 children enrolled, all of whom are patients of pediatric hematologist/oncologist Dr. Ammar Morad. Several of the hospital’s nurses made bags by hand to hold the precious beads.  At 16, Ollie is the oldest participant. The youngest, a preemie, was 28 days old. Her parents collected the beads so that one day, they will be able to explain her struggle to her.

At Women’s & Children’s, each strand starts with beads spelling the child’s first name, followed by one from AFLAC, the sole sponsor, which symbolizes the insurance company’s commitment in fighting alongside the participants. As patients undergo treatments and reach milestones, they add the corresponding beads. “Every strand looks different, depending on the patient,” explained Women’s & Children’s Child Life Specialist Janie Eldridge. “They’ll be 10 feet, 30 feet long. The average amount of beads that a patient gets is around 500.”

During a hospital visit, a five-year-old boy told Dr. Morad that he wanted more blue beads and fewer yellow ones. “He was able to communicate himself and express his desires through the beads by saying, ‘I want more office visits, and less nights in the hospital,’” Kraft explained.

As for Ollie, he is awaiting word on a matching donor for his bone marrow transplant. He is comforted by his sister, Kasavean, age 11, who also has sickle cell anemia. Fortunately, she has not suffered as much as her brother. “Kasavean will rub him wherever he is hurting,” Tanya observed. “She will kiss him and tell him, ‘I love you. It’s going to be okay.’ And when she starts to hurt, she says, ‘I see what brother feels.’” The youngest sibling, 10-year-old Keana, age 10, does not have the disease. Both parents, Ollie, Sr. and Tanya, carry the trait for sickle cell anemia, but do not have it.

After being home-schooled last year, Ollie is planning to return to public school this fall. “He’s had his moments of wanting to give up,” his Mom revealed. “But, as a family, we are sticking together through this. God helps you keep it all together.”

Ollie is proudest of the red beads he received for transfusions. “I can see the things I’ve been through,” he said. “It made me feel better.”

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