CARING COMMUNITIES

'Beads of Courage' tell tales for children with cancer

Cheryl Makin
@CherylMakin
  • "Beads of Courage" are a way to honor pediatric cancer patients for daily challenges and courage.
  • The Rutgers University Men's Lacrosse team sponsored the hospital's "Beads of Courage" program.
  • The Children's Hospital at Saint Peter's kicked off its "Beads of Courage" program Monday

NEW BRUNSWICK – Carefully and with a manual dexterity that belies her age, Hayden Lawrence strings bead after bead onto her necklace. Only 2 years old, Hayden has acute lymphoblastic leukemia (ALL). Diagnosed in October, the little girl has endured numerous treatments — all of which now are part of her story, represented by her "Beads of Courage."

On Monday, The Children's Hospital at Saint Peter's University Hospital launched "Beads of Courage," a program dedicated to improving the quality of life for young patients and families.

"I thought this program was a wonderful way for our children to be honored for the daily challenges and courage that they, their parents and siblings go through," said Irina Mariano-Brown, a social worker with the hospital pediatric hematology/oncology department and facilitator of the program. "It is very popular program in hospitals in other states and it had long been our hope to bring it here."

A physical symbol of a journey

A program instituted in more than 200 children's hospitals, "Beads of Courage" are given to children with cancer as they pass treatment milestones. Each bead represents a different aspect of the cancer journey. For example, a chemotherapy session gets a white bead, a day of radiation therapy garners a glow in the dark bead, a clinic or infusion room visit gets a blue bead, a lumbar puncture equates to a tortoise shell bead and surgery gets a star bead.

Beads are given for the various steps along their treatment by nurses, counselors, child life therapists, social workers, physicians or other health care professionals. The children also are given a "Daily Bead Journal" that lists approximately 30 different beads that correlate to various treatments or milestones. The achievements and the corresponding dates are marked on the journal.

According to Dr. Stanley Calderwood, chief of pediatric hematology/oncology at The Children's Hospital, the program has many benefits for the children.

Called an arts-in-medicine program, "Beads of Courage" and similar concepts not only serve as a fun, reward system but decreases illness-related distress, depression, anxiety and social withdrawal. It also increases coping strategies among children and families, provides hope and spiritual perspective and enhances social support.

"It's a very personal journey and this gives the children a very tactile record of what they have been through. It also is a great way for the kids to communicate. They understand the message of the beads," Calderwood said. "It's their medal of honor — a sense of accomplishment. The beads also give them something to look forward to whenever they have to go through something difficult."

Calderwood added that the program instills a greater compliance among the patients.

"Cancer is extremely difficult and disruptive for the child, family and whole community. With the 'Beads' program, they become more diligent in doing what they need to do," he said. "And gain a sense of mastery along with their record of accomplishments."

Rutgers lacrosse player Scott Bieda sits with Elijah Anderson, 9, of Princeton, while he admires his RU lacrosse poster, Monday, April 20, 2015, during a beads of courage ceremony at The Children’s Hospital at St. Peter’s University Hospital in New Brunswick.

Let the beading begin

Monday's kick-off ceremony honored the pediatric-cancer patients and their families, calling up a child one at a time to collect their bag of beads and necklace. Understanding something special was happening, Hayden even stopped for a photo opportunity along the way and flashed a big smile.

"She is excited about this," said Lindsay Lawrence, holding 2-month-old Grayson as Hayden's father William handed their toddler bead after bead. "She has been good throughout, but is getting tired of it. This will give her a little more positivity and something to look forward to."

Lawrence, who resides in Howell, said that Hayden is "doing very good," but her cancer protocol calls for treatment until December 2016.

"I had a bit of a meltdown when I was writing up what beads she earned so far," Lawrence said. "I didn't even put in the clinic or finger prick beads. There were just so many. I will from now on."

Preeti Samarath watched her daughter Aashi, 2, as she wore her "Beads of Courage" necklace. Aashi was excited at first, but soon tired as she had just finished a chemotherapy treatment.

"I don't think she is understanding the beads yet," said Samarath, who said Aashi has ALL. "I think in the future she will understand, but she doesn't even talk yet. She is used to this and loves the people here."

For the Bastida family, beads were on hand for two of Irving and Lorena's four children. In their young lives, both Nicholas, 6, and Jacob, 4, were diagnosed with cancer — ALL and Burkitt's Lymphoma, respectively.

"We have been doing this (cancer treatments) for seven years," said Jacob Bastida of South Bound Brook. "Nicholas was diagnosed at four months old, had two years of chemotherapy and is in remission and Jacob finished his last dose of chemotherapy today. There's a special bead for that."

Bastida loved the idea of the "Beads of Courage" program.

"I think it is encouragement for the kids to do what they do best — be kids," he said.

Three-year-old Aashi Samarth of South Brunswick passes Rutgers lacrosse players as she walks to receive beads of courage at St. Peter’s University Hospital, Monday, April 20, 2015, in New Brunswick.

Making "Beads of Courage" a reality

Also on hand to share in the children's special day were 45 members of the Rutgers University Men's Lacrosse team. As sponsors of "Beads of Courage," the lacrosse team raised $5,000 through a fall scrimmage game with University of Massachusetts and other fundraisers. Head Men's Lacrosse Coach Brian Brecht said he was proud of his student-athletes who worked hard to raise the funds and came to show support.

"The lacrosse team sponsoring the program made it a reality for our children," Calderwood said.

Rutgers senior Joe Nardella, 21, and a few of his teammates spent a long time bonding with Elijah Anderson, 9, a pediatric-cancer patient from Princeton. The athletes and Elijah discussed surfing and sports among other topics.

"It's nice to see them so happy," said Nardella referring to the children in the "Beads of Courage" program. "It was an honor to get this experience and get to be a part of the program."

It is Calderwood's hope that years after treatment, his pediatric patients will pull out their "Beads of Courage" and take pride in their journey.

"I want them to look at the beads, and think, 'This is what I went through,' " he said. "It is the power of the token. Each has meaning. It is not necessary for it to be understood. It is more about what it represents — strength, courage, perseverance. This is what is powerful to the kids."

For more information about The Children's Hospital at Saint Peter's University Hospital, go to www.saintpetershcs.com or call 732-745-8600. For information on "Beads of Courage," go to www.beadsofcourage.org.

Staff Writer Cheryl Makin: 732-565-7256; cmakin@gannettnj.com