Shine On! Kids
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Mission Statement
■Mission Shine On! Kids supports children in Japan with cancer and other serious illnesses through a number of innovative, evidence-based psycho-social support programs. Understanding that a journey back to health is not only about the patient, Shine On! Kids also supports the multiple family members caring for these kids inside and outside of the hospital as well as the medical staff who undergo their own challenges of managing stress in caring for very sick kids. Shine On! Kids aims to redefine the concept of patient support in pediatric hospitals throughout Japan to create a complete support system: ■About Pediatric Cancer in Japan: Childhood cancer is the number one cause of death for children in Japan after accidents. A child is diagnosed with cancer in Japan about once every 3-4 hours each day. While the prognosis for many childhood cancers has improved significantly, the treatment process is still long and grueling. Children undergoing treatment for cancer in Japan are generally hospitalized for quite a long time—from six months to one year or more. This puts an incredible burden on the patients and on the family supporting them. For example, mothers (or caregivers) go to the hospital daily, staying from early morning until their child goes to sleep at night. By necessity, their world becomes the hospital, even if this is at the expense of spending time with the rest of their family. For the children undergoing cancer treatment, hospitalization can be isolating (often children under 12 are not allowed to visit the cancer ward) and frustrating. Most kids in treatment really want nothing more than to do normal kid things—like play with friends, eat what they want, and go to school. Thankfully, most kids will survive their illness. However, over 60% of pediatric cancer survivors suffer some kind of late effects. This is why Shine On! Kids’ support continues for years after a child is discharged from hospital! While many of the children participating in Shine On! Kids Programs are oncology patients, our programs support children with a wide range of illnesses. ■History - The Tyler Foundation becomes Shine On! Kids: The Tyler Foundation was incorporated as a Non-Profit Organization under the laws of Japan in July 2006.The creation of the organization was inspired by the smiles and courage of Mark and Kim Ferris’s son Tyler, who spent much of his short life battling a very difficult-to-cure kind of leukemia at a hospital in Tokyo. After they lost Tyler, they realized there were many ways to take Tyler’s struggles and their experience and create something positive for families going through what they had endured. When Kim and Mark Ferris started the Tyler Foundation, it really was about a family’s personal struggles and inspiration. But it has grown into something so much more than that. Today the organization has touched the lives of thousands and thousands of children, parents, siblings, and medical staff all over Japan through its programs. Today, it is about those children—their courage, their smiles, their stories. When the organization received official Nintei NPO certification from the Japanese government in 2012, the Tyler Foundation became Shine On! Kids and its mission was expanded to support ALL children who are very sick in hospital. Shine On! Kids is about helping children face life with confidence, smiles, hope, and courage. It’s about helping kids in Japan with cancer and other serious illnesses truly Shine On!
About This Cause
●Overview Shine On! Kids, established in 2006 and certified as a special Nintei non-profit organization on December 7, 2012, supports children with cancer and other serious illnesses and their families in 25 hospitals throughout Japan. Programs like our Hospital Facility Dogs and Beads of Courage provide evidence-based, psychosocial support to patients during treatment and even after discharge from the hospital. Shine On! Kids’ activities are funded by donations from individuals, organizations and companies. ■Hospital Facility Dog Program Shine On! Kids’ Hospital Facility Dog Program pairs a “Facility Dog”—a dog that has been specially trained for 18-24 months to international service dog standards to work in a children’s hospital—with a “Clinician Handler,” a medical professional who has acquired the knowledge and skills for handling the Facility Dog. Together they work every day at a single children’s hospital as part of the medical team, supporting the care of the sickest pediatric patients. All of Shine On! Kids’ Hospital Facility Dog handlers are certified nurses with years of clinical experience. Because the handler is a medical professional, they: -Have access to medical records to better plan interventions -Understand the specific challenges of each patient’s current condition -Understand the special care needed in managing the dog around the patient -Are accustomed to implementing strict infection control protocols -Have experience supporting very ill patients and family members -Some activities include: -Visiting individual patients’ bedsides -Walking/riding with patients to surgery -Sitting with patients during a variety of medical procedures, such as lumbar punctures -Working with patients during rehab -Crawling into bed and helping distressed children fall asleep -Comforting family members Supporting the medical and hospital staff ・How many hospitals and patients: As of June 2021, Shine On! Kids supports 4 hospitals in Japan with total of over 6,000 visits per year ■Beads of Courage Program Beads of Courage®, a form of arts-in-medicine, was developed by pediatric oncology nurse Jean Baruch in the United States. The Beads of Courage® Program is a resilience-based intervention designed to support and strengthen the protective resources for children coping with serious illness. ・How does it work Children fighting cancer and other serious illnesses receive colorful beads as meaningful symbols of courage to commemorate milestones they have achieved along their unique treatment path. Each bead tells a story of strength, honor, and hope. The patients keep a record of all of their treatments in their Bead Diary. Designated medical professionals (including nurses, clinical psychologists, and child life specialists) are trained by Shine On! Kids to become Bead Ambassadors. These Ambassadors meet with each child once a week to talk about their treatments that week, listen to the children talk about how they feel, and together go through the Bead Diary and collect the child’s beads. On average, a child undergoing treatment for cancer will collect about 900 beads in one year of treatment. The beads themselves are high-quality glass, ceramic and polymer—strung together, they are both beautiful and very heavy. The weight and length of the bead strands also serve as a reminder of the long and courageous journey these young people must embark upon to get better.There are also a number of very special courage beads collected along the way. These beads, handmade and donated by Japanese bead artists, are given during a particularly challenging time for the child … not as a reward, but as a reminder that they have been courageous enough to get through that challenge! ・How many hospitals and patients: Shine On! Kids provides all of the materials and training to implement and ensure the ongoing quality of the program at each of the 24 hospitals currently executing Beads of Courage® in Japan. Average of patients that we support annually is 450. ■Camp Courage for Survivors We are thrilled that some of the pediatric cancer patients who benefited from Shine On! Kids programs in the past are now recovered and moving along their path to becoming adult members of Japanese society. However, many of these amazing kids have also had to work through challenges in addition to their cancer treatments. Most pediatric cancer survivors—over 80% of them—experience some kind of late effects from the very intense treatment they underwent as younger children. Some need to take growth hormones, some will never be able to have children, some had to work hard to catch up after missing school for a few years, and many struggle with other smaller physical and psychological scars from the years of chemo, surgery, and radiation. Driven and planned by the older survivors with the help of Shine On! Kids, each workshop features an educational theme and an opportunity for sharing experiences and building friendships and community. IMPACT: ・Empowerment: Older pediatric cancer survivors feel empowered as they mentor and encourage their younger counterparts. ・Shared Experiences: Children and young people with a shared experience (cancer), who might not otherwise have a chance to meet, can interact, share feelings, and learn from each other in a safe and private environment. ・Networking: Young people can build a support network that can be relied and drawn upon as they move forward in their lives post-cancer. ・Skills: Participants are introduced to a variety of new skills by experts in their field—inspiring them with ideas for their future work lives. ■Shine On! Connections: Children in hospital are experiencing decreased communication and increased stress due to social isolation from COVID-19 restrictions. Even with our three programs still in operation, it is clear MORE support is needed.So in June 2020 Shine On! Kids launched an “emergency” program called Shine On! Connections. What’s happening in hospitals right now in Japan due to COVID-19 infection control measures? -Weekend home visits suspended -Sibling visits suspended -1 hour limit on parental visits -Suspension of in-hospital schooling -Suspension of in-hospital volunteer activities, activities by volunteers, and others Impact on children in hospital -Increased emotional instability due to lack of parental care -Loss of learning and play opportunities -Minimal opportunities for communication with non-medical staff -Increased burden per medical staff member due to infection prevention measures How it works： Distribute communication technology and OriHime robots to 17 hospitals nationwide along with bespoke, engaging program content created in collaboration with field specialists. Hospitals select from a menu of activities and book live sessions: Virtual Facility Dog Visits/English Cross-Cultural Communication Support/Music Learning /Storytelling/Family Support Activities/STEAM Learning such as Technology & Science/ Remote visits to locations such as museums and aquariums and work experience program with the OriHime robot/Integrated Learning Support to Foster Communication Skills Based on Math and ScienceScience and mathematics support GEMS (University of California Exploratory Services) collaborative project with instructors/Lego project/Music Science Support TanQ Quest (tanQ) ・Why use the OriHime robot? Supported by hospital psychologists and medical staff, Easy to clean and comply with infection control policies, Fun for kids to communicate with a robot, Children can control the robot with an iPad, which gives a sense of empowerment (in contrast with the many things patients cannot control) Lays the foundation for technology learning from preschool age