'Seeing kids fly' - battling cancer with a smile
MANILA, Philippines - Imagine spending most of your life in a hospital bed, limited by the tubes and devices attached to you; and, to add insult to injury, you’re not even allowed to eat chocolate.
This is how Elijah Adamos described the lives of the children he encountered as a member of Kythe - an organization that addresses the fears, pains, and sadness of children with chronic illnesses and their families.
“The most hurtful experiences always come from the death of a kid. Some kids I’ve become friends with while some I don’t really know. I think it hurts a lot because we think there should be a reason for death - for kids dying - and yet there will never be an answer,” Adamos said.
In the Philippines, the number of children with cancer rises 30% yearly. In 2014, an alarming UN report from the said 3,500 new cases of pediatric cancer were recorded, around 70% of which were diagnosed in the late stages.
As a Kythe volunteer, Adamos is tasked to visit pediatric wards to play with and comfort sick children. This, the organization believes, gives the kids and their families hope that life can be better. He said the experience is life-changing.
“Kythe made me more hopeful. It seems counter-intuitive but seeing kids stricken with cancer made me more hopeful that there is joy even with disease and that life is bigger than the conditions we’re placed in,” he added.
It all started with a thesis for a masters of arts (MA) degree.
After finishing their MA coursework in psychology at Ateneo de Manila University (ADMU) in 1992, Kythe founders Girlie Lorenzo and Icar Castro realized that their interactions with pediatric cancer patients during their research were invaluable. They couldn’t let go of the experience.
“When we were about to graduate, Icar and I talked. We said we couldn’t leave what we started. So we put up a sign up sheet asking for volunteers,” Lorenzo said.
Kythe - an Irish word that means “to manifest itself” - was born. The organization allows children to play, grow, and develop while receiving appropriate hospital care.
“We started with around 20-30 volunteers. We had to train them because it’s different interacting with children with cancer compared to street children and orphans. We started with one hospital and now we’re in 12,” Lorenzo added.
When Lorenzo and Castro left ADMU, they established a student arm Kythe-Ateneo, which provides volunteers for the mother organization. Adamos served as Kythe-Ateneo’s president from 2011 to 2012.
For the past 22 years, Kythe has been practicing and advocating the Child Life Program, a method that uses play therapy and education to alleviate the anxiety of patients with chronic illnesses like cancer, heart conditions, kidney disease and blood disorders.
“When I was attending pediatric oncology conferences in the US in 1996, I learned about the Child Life Program (CLP). The objective is to ease the anxiety of the patients and help families cope with the hospital experience. I saw it as a good system of caring for children in hospitals,” Lorenzo said.
Kythe’s CLP gives 3 services to the patients:
- Play with and educate the child about the illness
- Tend to the emotional needs of the child and family
- Assist during medical procedures
- Lend medical and financial help
- Support parental involvement in the child’s treatment
“The most memorable experience will always be the activities we spend with the kids. Seeing the kids smile and run around, unbound by the chains of their disease. It’s like seeing a kid fly and wishing it would last a lifetime,” Adamos said of the CLP.
Lorenzo said Kythe is currently in transition from being service providers to systems changers in the country.
The organization’s ultimate goal is for all hospitals to have psychosocial support and CLPs in the pediatric ward.
“Right now we’re only in hospitals managed by the Department of Health. We will talk to DOH and the Philippine pediatric society to come out with a policy that all hospitals with pediatric departments should have a child life/ psychosocial program for complete and holistic child life care,” Lorenzo said.
She added: “We have to start it. I have to start it with the parents, and pediatricians so you create a demand. If you are able to slowly tell them that this is what’s supposed to be done, then hopefully, it will catch fire and everybody will know what to do, there’ll be a demand."
Lorenzo was named as the first Ashoka Fellow in the Philippines in 2014. Aside from receiving a living stipend for an average of 3 years - allowing them to focus full-time on building their institutions - Ashoka fellows also become part of a global support network of peers and strategic partners from whom they will benefit for life.
She admitted that it’s not an easy task but her fellowship has helped her develop plans to expand the organization.
“It’s been challenging because I have to walk the talk and live what I espouse, my advocacy. But because you love what you want, it’s not hard. The challenges externally are giving the added pressures but at the same time, it helped in our transition,” Lorenzo said.
In part due to limited funding, Kythe has had to scale back on its operations.
“We decided to become a service-provider for 6 hospitals - meaning we will provide the salary of the full time child life coordinators. The other 6 will become capacity builders, we’re going to transfer our skills to them,” Lorenzo said.
But Lorenzo is determined not to let limited funding hinder the organization's reach.
“We’re going to transfer our skills in the CLP to the parents because they’re with the patients 24/7. It’s like replicating ourselves since we deal with up to 1,000 kids in one hospital."
Like most of what its volunteers learn from their experiences with kids, Kythe’s main goal is to eventually let go of its partner hospitals.
“We begin with the end in mind. For me, that’s the measure of success - that when you leave, they can do it on their own. That’s where we’re at, changing systems,” Lorenzo said.
The experience has not only helped alleviate the plight of kids with chronic illnesses, it has also formed thousands of volunteers like Adamos who have given their time to help the organization.
“Kythe made me see the beauty of living life like a kid, helped me look at things in the eyes of a child, and encouraged me to face life like a kid: running with a smile on my face and my head held high,” Adamos said.
For Lorenzo, it’s all about spreading the love.
“We influence the people that we work with so that they themselves can become change makers in their own right. Because of their experience with Kythe, because they experienced empathy and weeping with the children, in their deeds and own little way, they are going to the peripheries,” Lorenzo concluded. - Rappler.com
If you're interested to support Kythe, contact them through their website.