~ Cassandra Koslen, photos by Jason E Kaplan
For children in Legacy Emanuel’s Journey Beads program, the fused glass pendants they  collect are more than mere jewelry. They are a way for the children, who are suffering from cancer or related diseases, and their families to track their treatment experiences in a creative way.

Journey Beads was started in November 2001 by Gina Volonte, a pediatric oncology/hematology social worker with Legacy Emanuel Children’s Cancer Program. The beads are made by students and studio artists from North Portland’s Aquila Glass School, and distributed to the patient and his or her siblings upon initial diagnosis.
 

 “A diagnosis of childhood cancer or other related diseases begins a long, emotionally and physically difficult journey,” said Volonte. “While these children and their families travel through this time in their life, they are ... recording each and every treatment they experience.”

At the onset, a child and his or her siblings receive a cord with their name and a single starter bead. More beads are added as treatment progresses, each representing a different aspect of their progress. A glow-in-the-dark bead, for example, may be given for a radiation treatment. Colors and shapes can also equal emotions, such as green for feeling worried, or the letter “B” for being brave.

“It’s fun to watch the kids go through them,” said Volonte. "Some kids find really ugly ones because that’s what represents their cancer, and some pick out very cheerful [pendants].”
In late 2005, Aquila contacted Volonte and asked to contribute creatively to the Journey Beads program. Every six months thereafter they have donated handmade pendants for Volonte to distribute.

At their studio, pendants waiting to go to the hospital are spread across a table. Some of the beads are as large as a child’s hand; others are small and abstractly shaped. There are dark ones, while others are brightly colored.

“We wanted to make sure [the pendants] are all different, because all the kids are different, and all their emotions are different,” says fusing instructor and Aquila co-founder Scott Curn.
 

Curn gets a little choked up describing different students who make the pendants that go to Legacy. Oftentimes he’ll tell fusing students, from groups like Big Brothers/Big Sisters and Art from the Heart, that they can make extras for themselves free of charge if they assemble more for the hospital. Aquila studio artists and individuals taking classes also contribute, many without being asked.

The studio hosts quarterly pendant-making nights on the third Thursday of every month.  Audra Pfond is a nurse at Legacy Emanuel who recently began working in pediatric oncology.  She and another nurse attended February’s pendant night. 

“The kids love [Journey Beads],” she says.  “The parents love it too; some of the kids are really little, and might not remember [the treatment process], so the parents feel that when they are older, they’ll have a memento.”

Audra Rodriguez brought her stepson, Tanner Wooten, to the pendant night as well.  She heard about the program on the radio.  “I thought it would be a good thing for us to do together,” she says, “and I think it’s really an important thing to do for the kids [at Legacy].”

After a few months of donating the pendants, Curn realized they had many extras, and told Volonte to give them out to the whole family.  Oftentimes young siblings of cancer victims can feel left out, although they suffer as well.  “We make enough to support the whole family,” said Curn.

Last October, the Giles family received the news that their four-year-old daughter Avarie had leukemia.  Since then it has been determined that she falls into the 5 percent of juvenile leukemia patients who do not respond to chemotherapy.  Currently, her best hope lies in receiving a bone marrow transplant.

Avarie's parents have lost two jobs since her diagnosis, and dedicated all of their time to caring for their daughter and other three kids.  

Since the diagnosis, Avarie has only been healthy enough to spend 37 days away from the hospital.  She and her siblings have been receiving beads since the beginning of the cancer treatment.  Avarie has already accumulated three necklaces’ worth of beads and pendants.

Avarie's mom Jenell says that the Journey Beads program has meant a  lot to her kids.  "It gives (Avarie) something fun to look back on instead of just the pain of the procedure ... I think her brothers and  sister enjoy it even more."

Emanuel Children’s Cancer Center,?501 N Graham, St # 355, (503) 413-2560, www.legacyhealth.org