Testaments to a long journey

The expanding Beads of Courage program brings hope to children with cancer

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Seven-year-old Alyssa Miller died 18 months ago, but her memory lives on in a thousand ways -- perhaps most visually in her Beads of Courage, a strand of glass beads that stretches more than 37 feet. It hangs on display next to her room, alongside Lance Armstrong's personally signed Tour de France jersey, in a shadow box her father built.

Because the beads gave Alyssa such joy, her parents, Marv and Maude Miller, have channeled their pain and loss into expanding the Beads of Courage program and creating a new Alyssa Bailey Miller Memorial bead -- decorated with a butterfly Alyssa drew -- in their daughter's honor.

Beads of Courage is a national program brought to Kapiolani Medical Center for Women & Children in May 2006. Its purpose is to acknowledge and honor the harrowing journey of pediatric oncology patients, according to Pamela Carey-Goo, a nurse who helped initiate the program.

Patients begin by spelling their names with lettered beads. They choose a glass bead for each procedure, special accomplishment or event. Chemotherapy earns one sort of bead, and radiation gets a glow-in-the-dark bead. A long stay in the hospital or a blood transfusion? Those are different. And losing your hair means you get to choose a custom-crafted bead in the shape of a head -- with hair.

What started with 50 to 60 participants is growing significantly. The Millers launched the program -- which requires funding for beads and special training for the nurses who dispense them -- at Tripler Army Medical Center and Kaiser Permanente on Sept. 14, the first anniversary of Alyssa's death. They maintain it with money donated to the nonprofit Alyssa Bailey Memorial Fund.

"Maude's secret desire is for all of the military hospitals that take care of kids to have the Beads of Courage program," said Carey-Goo. Maude is a veteran, and Marv supervises the maintenance on the minisub used by the Navy SEALs.

While the Millers continue to focus on children with cancer, Carey-Goo recently expanded the program at Kapiolani to include Kardiac Kids -- children with heart ailments -- and adult women, most of whom are suffering from ovarian or breast cancer.

Amid the expansion, Maude has become a roving Beads of Courage ambassador. Kids usually call her "the bead lady." Wearing an official Beads of Courage T-shirt with the words "String of Strength, Story of Survival," and a necklace adorned with tributes to her daughter, including a memorial teardrop, Alyssa's baby ring and an imprint of a poem describing "What Cancer Cannot Take from You," Maude is committed to bringing this small element of beauty into lives filled with suffering.

When the Millers visit the pediatric oncology ward at Kapiolani, nurses rush to them with emotional hugs. But inevitably, someone is there with a strand of beads, and the tears are wiped away for a moment. For those involved in caring for people dealing with life-threatening illnesses, the beads infuse positive feelings into a somber atmosphere.

"It's my way of giving back and making sure that Alyssa's life meant something to people," said Maude, who also spoke of what she gets in return. "You watch these kids, and they're all upset and they're not themselves. And all of a sudden, you bring out this box of beads, and this huge smile comes to their faces. It's really all about the smile."

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Claudette Vonkeltz curled up in a reclining chair at Kapiolani Medical Center for Women & Children in the company of a television, a steady stream of nurses and an intravenous line delivering powerful doses of chemotherapy. The 43-year-old Big Island resident and mother of two was diagnosed with ovarian cancer in December. Now, as clumps of hair appear in her brush every morning, she looks ahead only one day at a time.

"It's not easy," said Vonkeltz, whose mother traveled from the Midwest to help take care of her children. "I wake up and cry. I'm very overwhelmed in my life right now. It's hurdle after hurdle."

But there is one bright spot: The Beads of Courage pilot program for adult women. The first of its kind in the country began last month. Just like the children, cancer patients select and string colorful glass beads that denote milestones in their treatment.

"I thought it was really neat," said Vonkeltz, fingering the few she's collected so far. "I like stringing beads, for one. And these are beautiful. It's an acknowledgment of what I'm going through. I'm being honored by receiving a bead, and it reminds me of the strength I have inside, and not to give up."

Rather than amassing one long strand, Vonkeltz considered breaking it up and using the beads several different ways. She thought she might create a bracelet, an ornament for her purse or perhaps a keychain.

Though it doesn't appeal to everyone, those who choose to participate seem to enjoy it. "Patients get really excited (about the beads)," said Suzanne Ditter, a breast cancer survivor and nurse at Kapiolani. Beyond treatment, "there's very little we can do for them, and this is just a fun thing to keep the mind busy. It's a way you can tell your story. Even the husbands love going through the (bead) box."

the program has expanded to include Tripler and Kaiser hospitals, as well as adults and children beyond the original pediatric oncology group (and soon the siblings of sick children). The beads also have evolved to include quite a few new ones, including an acknowledgment for attending a session with the child psychologist. Several -- a paw, bone and dog's head -- mark visits from Tucker, the golden retriever therapy canine for the pediatric intensive-care unit.

Pamela Carey-Goo, the nurse who manages Beads of Courage at Kapiolani, said some people prefer to keep their beads in a bowl, or use them to construct sculptures. When a 21-year-old patient died, his girlfriend made a poster board explaining what all of the beads represented. It became the focal point of his memorial service, and proved therapeutic for all.

Carey-Goo said it's important for the family to collect all the beads, because they complete the story -- no matter how it ends. Often, family members don't feel emotionally equipped to return to the hospital after a child dies. In those cases, nurses will meet them somewhere else to deliver the missing beads -- including a hand-crafted butterfly that signifies the final bit of bravery.

"It's literally a tangible documentation of every step of their journey," said Lynne Woodell, director of philanthropy. "They know when something's out of order or missing."

As the program has expanded, so have the sources to fund it. More than half the children treated at Kapiolani have no insurance, or use Medicaid or QUEST, which pay the hospital only 60 percent of its costs. This leaves little room for anything beyond the necessities.

Begun initially with donations from Larry Taff and his wife, physician Kheng See Ang, as well as several bead galleries on Oahu, Beads of Courage relies on a variety of contributions.

Alethia Donathan, for instance, owns DACS Beads and conducts classes at St. Andrews Priory. Students create handmade beads and donate them to Beads of Courage as part of service projects. Nurses who work with the patients daily also support the program over and above their demanding duties. Debbie Shimabuku makes and sells bracelets, donating the proceeds to the Beads of Courage program. "She doesn't even take money to pay for her supplies," said Carey-Goo.

Eleven-year-old Tishelle Hepa is one of the patients who benefits from this largesse. Her battle with leukemia has given her an impressive strand of beads. Prompted by an inquiry about its length, she and her mother stretched it across the hospital ward. Tishelle looked up and said with a smile, "About that long."

Tishelle said the beads "are colorful, and I like to look at them, and when I do, I think, wow, I've been through this much!" When asked what she would tell other kids in a similar situation, Tishelle considered her answer. "Try to get friends, and be a happy person. Never give up. And always just thank your parents."

Last week, Tishelle also enjoyed a visit from Maude Miller, whose daughter, Alyssa, was one of the first patients to participate in the Beads of Courage program in Hawaii. Tishelle and Alyssa, who died in September 2006 at age 7, got to know each other during their visits to Kapiolani. On this day, Maude had a special gift for Tishelle to add to her string: Alyssa's new memorial bead.

Alyssa loved her beads so much that she made sure her parents created their own strands. Featured prominently on both necklaces is a butterfly.

According to her mother, when Alyssa discovered that the butterfly was a symbol of strength, she said, "I'm a butterfly!" It now plays a prominent role in Beads of Courage, a program Maude Miller believes has few limits.

'Just listen' When a parent is trying to cope with a terminally ill child, everyone wants to help. But few know what to do. Maude Miller, whose daughter, Alyssa, died in 2006, has some recommendations. "A lot of people told me, 'Everything happens for a reason,'" says Maude. "I hate that." Others encouraged her to clean out Alyssa's room, which remains exactly as it was -- decorated with hundreds of stuffed animals given to her during her battle with cancer. It would make things easier, they insisted. But these attempts to comfort the Millers only made them feel worse. Unless you have experienced the death of a child, it's best not to offer advice. Those who have been through such an ordeal usually know not to try. In short, hugs are well received. But beyond that, according to Maude, there's only one thing to do: "Just listen." It usually works quite well. Katherine Nichols, Star-Bulletin