Children should be flying kites, not fighting cancer!
by Sunny Rae Fragante
This is the slogan of Kythe Foundation --- a group of doctors, child life specialists, and volunteers helping children fight cancer through holistic programs and activities, apart from their needed medical treatment.
Kythe is derived from a Scottish word (kayth) meaning healing through simple loving, sharing, and togetherness.
The Kythe Foundation is a pioneer in the implementation of the Child Life Program for child cancer patients in the Philippines. Its mission is to provide psychosocial support to pediatric cancer patients and their families and increase awareness of pediatric oncology through educational research, and in the process, strengthen hope in pediatric cancer patients and their families.
In 1992, Dr. Victoria M. Abesamis, a pediatric oncologist and the head of the Tumor Clinic at East Avenue Medical Center in Quezon City, thought of forming a multi-disciplinary team to treat children with cancer. Dr. Abesamis invited Carmen Castro and Fatima Garcia, psychology graduate students from the Ateneo de Manila University who were working with her as part of their academic requirements, to volunteer for the group they called Kythe. The role of the two psychologists in the multi-disciplinary team was to address the psychosocial needs of pediatric cancer patients and their families.
In 1994, Kythe, Inc. was registered with the Securities and Exchange Commission as a non-stock, non-profit corporation.
As Kythe developed programs and professionalized its system, its presence began to be felt, not only at East Avenue Medical Center where it is based, but in the medical community. Its volunteer base in the Ateneo de Manila University also grew steadily as more volunteers signed up.
In 1998, Kythe systematized the care for pediatric cancer patients at the East Avenue Medical Center through the Child Life Program, and the following year, the group expanded its services to include pediatric patients in the Pediatric Surgery, Orthopedic, Opthalmology and EENT wards of the hospital. That same year, Kythe reached outside of its home hospital when it helped establish a Child Life Program in the Pediatric Ward of the Armed Forces of the Philippines Medical Center (AFPMC) in V. Luna, Quezon City.
In 1999, Kythe published children’s book, “Kapitan Kimo” written by Allan Cabisaga and illustrated by Dion Bartolome, a Kythe nurse-volunteer, to help children from three to five years old understand the effects of cancer and chemotherapy.
Kythe marked a number of milestones in 2000. Two of its volunteers, Allan Cabisaga and Fatima Garcia, completed their internship as Child Life Specialists in Australia and the United States respectively. Fatima Garcia, who is Executive Director of Kythe, was internationally recognized as a Child Life Specialist. Both Allan and Fatima are members of the Child Life Council that recognizes child life specialists all over the world. Kythe was also featured in the Council’s official bulletin as a pioneer in implementing child life programs in the country.
Also in 2000, Kythe launched its website (www.kythe.org) from where a number of people from overseas have learned about Kythe and have given their generous support.
The Foundation’s volunteer base expanded dramatically to include students from UP Pahinungod and the University of Sto. Tomas. The Loyola House of Studies provided the volunteers with a spiritual moderator in the person of Bro. Robbie Sian, S.J., a recognition that volunteers need to develop their own emotional and spiritual support to be able to care for the children.
Support Kythe has been coming from all over as more and more people are touched by the foundation’s work. With the help of the media, Kythe has increased awareness of the plight of children with cancer, especially those from the underprivileged sectors. Among the donors and partners who have helped the foundation are the Make-a-Wish Foundation Philippines, Jaime Paterno Foundation, Couples for Christ, Migi’s Corner, Brotherhood of Christian Businessmen and Professionals, Rotary Club District 3800, Hands On Manila, Enchanted Kingdom, Store Co., Inc., and Citibank.
The Department of Health has recognized the foundation’s work and expertise with a grant to transfer its knowledge of the Child Life Program to other government-affiliated hospitals. Kythe supports the Child Life Programs in the National Children’s Hospital, Philippine Orthopedic Center, National Kidney Institute, and the Quirino Medical Center.
In 2003, Kythe is set to launch the Child Life Program in the University of Sto. Tomas Hospital and in hospitals in Tarlac and Davao. It will be training Child Life Coordinators and volunteers from these hospitals; some of these seminars will be open to the public within the year.
Giving life, giving hope
The Child Life Program is the embodiment of Kythe’s vision of strengthening hope in the hearts of pediatric cancer patients and their families. The Program has three main goals: to promote optimum development by supporting age-appropriate development; to minimize their psychological trauma by helping the patients and their families maintain their normal routine; and, to give total quality care from the time of disclosure of the illness up to the time the child survives, or in some cases, even after the child has passed away.
Kythe pursues these goals in several ways. They provide emotional support through family counseling and patients are given activities to relieve stress and to distract them from the pain. This is especially useful for babies and toddlers--even when recovery is no longer possible, Kythe continues to provide support by visiting them at home and counseling the family. It also provides monetary assistance and bereavement counseling to families of children who do not survive.
The Child Life Program has five phases.
In Phase 1, Preparation for Health Care Procedures, family counseling begins with initial education on the illness of the child, information about the hospital, the Foundation, and other services.
In Phase 2, Assistance During Health Care Procedures, Kythe monitors the child and the family’s stress levels, and provides psychological activities for stress relief. For out-patients, Kythe volunteers and staff use distraction techniques during chemotherapy, therapeutic play, “Celebrate Life” parties, and Christmas parties. For in-patients, Kythe volunteers and staff come in for bedside play activities or storybook reading.
In Phase 3, Bridging Transition from Hospital to Home, the foundation establishes support groups among family and friends, provides tutors for patients to augment their lost time at school, and initiates outdoor social interaction, annual summer camps for children and adolescents, and cultural exposure trips.
In Phase 4, Hospice Care, Kythe volunteers and staff make home visitations and conduct counseling sessions with families for anticipatory grief.
In Phase 5, Bereavement, Kythe gives a small donation to the family to augment funeral expenses, conducts bereavement counseling sessions, and holds a Memorial Day for the child. In most cases, the families of the bereaved, having been touched by Kythe’s support, return to become volunteers and work with other families going through the same emotional trauma of losing a child.
It is one of the aims of Kythe to increase public awareness about pediatric oncology though education and research. It conducts campus campaigns through seminars, and volunteer training is a regular activity. Kythe has set-up a library of valuable resource materials and actively supports further research in the field of pediatric oncology.
The Kythe approach is holistic. The patient is treated not only for the physical pain, but also for the emotional, social, and spiritual agony he goes through. The process involves the family, based on the principle that when one member of the family is sick, all its members share the pain.
Taking care of little ones by taking care of the little things
Through the years, Kythe has emerged as a powerful group that has affected and transformed the lives of those it has touched.
Most of the credit must go to its volunteers--men and women from different schools, professions and walks of life who have unselfishly shared their time and resources with the cancer patients and their families.
In the playroom, volunteers can be found sprawled on the floor pretending to be animals, perching precariously on tiny chairs while reading aloud from storybooks, or getting icing all over themselves as they help the children decorate cupcakes.
During camp, they ride the roller coaster five times with the kids even when their lunch threatens to come out of their noses, and don crazy costumes to make the children laugh.
Many times they shed copious tears grieving for the friends who have gone before them. They hold the hands of mothers, fathers, brothers and sisters, sharing their grief and anguish.
A Kythe volunteer must possess the emotional maturity, inner strength, and spiritual grounding to be able to face the possibility of death. As one volunteer put it, “I went as a volunteer. I came to help. I came to give my energy, my time, my enthusiasm --- my entire self. But I came back with so much more… I came back with more hope, strength, enlightenment, faith, and love than I ever thought my heart had the capacity for.”
They cannot help but be touched by the sick children, many of whom face life with enthusiasm and passion, children like Stala who wrote to a volunteer, “Sa dami-dami ng tao sa mundo, ikaw lang ang dumating upang pagandahin ang mundo kong dumilim (Of all the many people in the world, you are the only one who has come to bring light to my darkening world).”
Observing a little girl whose immediate family have left her in the care of an aunt, happily playing with toys in the playroom, a volunteer said, “They say that to whom much is given, much is expected. But perhaps today the opposite has occurred --- at least in my case with Analyn --- from those who have little, much is to be learned.”