“Pain is one of the most misunderstood, underdiagnosed, undertreated and untreated medical problems, particularly in children.”¹

The video, entitled Julius, opens with various awareness statements about the phenomenon of pain, myths in the field of pain management for children, and the barriers that prevent its greater understanding.²

Dr. Angie Sievert-Fernandez, Kythe Inc.’s resident Child Life Program Manager, recently attended the First Interdisciplinary Academic Conference on the Holistic Support of Children in Healthcare last April 13, 2013, jointly hosted by the Organization for Pediatric Support in South Africa and Netcare. The conference was held in Johannesburg, South Africa, and Dr. Angie stood as a representative for the Philippines, given her background in psychology, wellness and pain management.

Dr. Angie’s contribution to the conference was a paper entitled “Developmental Characteristics in Chronically Ill Filipino Children’s Concept of Pain: An Exploratory Study”. The paper emphasized the need to recognize, effectively assess and manage the pain of children through developmentally appropriate practices and methods. This is a strong advocacy of Dr. Angie and Kythe as an organization through the implementation of the Child Life Program.

Both the paper and the Julius video were lauded by other attendees of the conference from the medical and allied medical health professionals, all pledging themselves to the cause of caring for children and acknowledging the great value of the paper to the national and international community.

“When making a decision on treatment in child healthcare,” a screen in the video states, “The tendency to listen to children is often the last resort.”³

Dr. Angie then begins to listen, conducting an interview with Julius spanning the duration of the video. Julius describes the experiences of his pain during and after treatment with great honesty.

Sometimes, he says, he does not want to say that he feels pain or how much of it bothers him – “I just cry sometimes,” he says.

Sometimes, the pain is very present and at the same time continued and sustained during and after treatment. “I scream,” he says, speaking about stomach pain. “I say it is painful… [the stomach pain] feels like it is burning inside.”

“If I ask you to complete the sentence, ‘pain is….’, what will you say?” Dr. Angie asks.

“Pain is painful, 100%,” Julius says very frankly.

“But also, what helps you feel thankful that it is no longer painful?”

“[I feel that way] when it is all over,” says Julius.

Most importantly, Dr. Angie delves into what may relieve the pain, to which Julius answers that he looks forward to Kythe activities. “I enjoy,” he says, “and it’s not like I am in pain anymore. [The activities help] because they are fun.”

Dr. Angie’s paper and presentation, in developing greater understanding and awareness on the experience and coping of pain, are great testaments to the resilience of these children at such early ages, and likewise, their courage in facing the realities of their condition with all their strength.

From the perspective of the Child Life Program, the healing, well-being and growth of the pediatric patients stands at the forefront of Kythe’s efforts.

The presentation stands in loving memory of Julius, who passed away in 2011 at the age of 14.

In the coming of the summer season, the heat often proves stronger than the wind. But that does not deter the Kythe kids from Cebu from running as fast as their feet can carry them across the grass with large, colorful kites in tow.

Last May 4, 2013, patients from Perpetual Succour Hospital, Chong Hua Hospital, Cebu Doctors’ University Hospital and Velez Hospital gathered at the Friendship Garden of Family Park for Kythe Flying. As suggested by Mr. Clayton Tugonon, one of the organizers and donors, the event was styled as a kite flying and informal picnic to create a relaxed and easygoing atmosphere, and was successful in doing so. The kids greatly enjoyed the outdoor atmosphere, with the fresh air and greenery  a welcome change from their everyday activities in the hospital.

The assembly of kites, along with some snacks, began at 3:30PM. The kids enjoyed their time flying the kites, assembling puzzles and posing candidly for pictures. Afterwards, books donated by Ms. Piko Valencia and friends from Hong Kong were distributed in packages. The event ended by early evening.

“I am so happy and proud that we have a Kythe Flying here in Cebu,” shares Perpetual Succour Hospital Child Life Coordinator Shalom Bernales, who also plays the part of Child Life Officer in Kythe hospitals located in the Visayas and Mindanao.

“We are thankful for supportive and generous donors like Mr. Clayton, Ms. Jojie Tugonon and Ms. Mary Ann Solomon, who have been with us ever since we started the event here. I know that it can grow bigger each year – and as long as the kids stay happy, I’m sure Kythe Flying will continue in the coming years and will be a way for more people to get involved”, Bernales concluded.

Here is a music video of this happy event; credits to Karl Dickon Terez.

ABOVE: Chiqui Escareal-Go
and husband Josiah Go.

“[Kythe’s Executive Director] Girlie has been my classmate ever since grade school,” Board of Trustees member Chiqui Escareal-Go says candidly of how she became involved with Kythe Inc. Their alumnae group from St. Paul’s College was a closely-knit one, they still keep in touch even after their high school and college graduations.

“I have always marveled at Girlie’s efforts and vision for Kythe and what it is doing for children with cancer and other illnesses. I know for a fact how big a heart and how strong a soul Girlie must have to sustain it all.”

Chiqui then heeded her own call to serve,. “I told myself that if I can do something to help the organization, I would be very honored. I believed in the program and trusted the people behind the organization. I knew what was in their hearts as clearly as I knew what my heart was wanting to do to be part of their efforts.”

As it is, many things keep Chiqui busy and on her feet: aptly describing the pace of her life as “always full and overflowing,” she currently runs the Mansmith and Fielders company as President and Chief Executive Officer and Waters Philippines as its Executive Director. She has been teaching marketing at the Ateneo de Manila University and is taking graduate studies in Anthropology at the University of the Philippines. She is an active advocate for positive change in various ways, as a core member of the Kaya Natin! Movement for good governance, Vice President of the Women’s Business Council Philippines and member of the Corporate Social Responsibility Committee of the Management Association of the Philippines. She is the wife of marketing guru Josiah Go and proud mother to Chase, Juju, Tricia and Calel Gosingtian.

Chiqui and Josiah, after first relating Kythe with its health advocacy of helping children with cancer, began to delve deeper into the Child Life Program. Their multi-level marketing company, Waters Philippines, deemed Kythe to be a worthy beneficiary of support via cause-related marketing. A portion of the sales of their water purifiers and detox systems were set aside for the Kythe art program. As Waters Philippines is involved in the direct selling of health consumer deliverables, the partnership was a fitting one.
Chiqui describes this as a win-win partnership between Kythe and Waters Philippines, and the relationship has continued for more than five years. “Our independent distributors,” she says, “also found the initiative inspiring and motivating. Being part of something good gave more meaning to their pursuit for sales points and earnings.
“Even now, some distributors have also volunteered to spend time with Kythe kids. Cause-related marketing has now become more personal, with direct engagement beyond sales.”

Chiqui believes in cause-related marketing as a shift toward fulfilling causes of the heart She pursues greater knowledge, social justice and equality, selfless service and humility, honor and integrity – good things to develop, she says, for oneself to be spiritually strong and progressive.

“When people help or give,” she stresses, “it is not to achieve anything for themselves. The intention is to keep paying it forward for the benefit of others, that perhaps people can find it in their hearts to pass on goodness and kindness as they have experienced or learned even from strangers. Even among Waters distributors, they have realized it is no longer just about sales or marketing, but a deeper, real personal engagement, requiring sacrifice, empathy, gratitude and generosity.

“It has become a way of life, building on the positive and sharing what we have with others. As we know, the positive is always more generative, the positive is always life-affirming.”

Chiqui, most importantly, is there in the moment when celebrating life with the Kythe kids. “I enjoy storytelling,” she says of her favorite activity with them. “I can see the varied reactions of the children when I engage them during the process – when I ask them related questions to the story, and I get different answers from different perspectives. I find myself learning from them, perhaps much more than they are learning from me. I always like seeing how the sleepy faces suddenly become alert because of a line in the story and how you read it. A smile from a Kythe kid is always the best reward any Kyther would get in their lifetimes.”

For someone whose list of things-to-do is never-ending, Chiqui puts Kythe as a priority in setting aside resources, personal service and dedicated commitment. After all, it is not all about sales and marketing — more inspiring is what Kythe does to one’s heart and soul, and in that lies the transformative power of selfless giving.

“Julius ” was launched last 13 April 2013 at the First Interdisciplinary Academic Conference on the Holistic Support of Children in Healthcare, a conference jointly hosted by the Organization for Pediatric Support in South Africa and Netcare, held in Sandton, Johannesburg, South Africa. Dr. Angie Sievert-Fernandez was invited to share about the practice of Child Life in the Philippines during the conference’s International Forum Discussion, as well as, to present her paper, “Developmental Characteristics in Chronically Ill Filipino Children’s Concept of Pain: An Exploratory Study”. Both presentations were positively received by participants coming from various medical and allied medical health professions, involved in the care of children. Through “Julius”, Dr. Sievert-Fernandez shared her findings on how chronically ill Filipino children understand pain and their pain experiences, as well as, the need to effectively assess and manage the children’s pain through developmentally appropriate practices, methods espoused by Kythe. Julius eloquently puts into words the pain chronically ill children go through during their illness, through the procedures and treatment and what can help them through it all.

Special thanks to our partners in sharing the story of Julius:

* Mr. Junie del Mundo and his team from EON The Stakeholder Relations Firm
* Mr. Iggy Bilbao and the rest of the Cinematic Studio team. ”

The Philippine Children’s Medical Center (PCMC) was recently incorporated into Kythe Inc.’s list of affiliate hospitals last December 2012, and has kept its flagship Cancer and Hematology Center (CMC) running for the past six years, since 2007.

Spearheading the actions and the driving force behind the Center is Dr. Eustacia Rigor, a long time specialist in oncology and hematology. A witness to the earliest developments of PCMC since its construction in 1980, Dr. Rigor received her training in the States and has been a capable overseer of how the Center executes its functions.

She observes that a prevalence of cancer and blood-related diseases opened up an underlying need for a specialized center to be built for the pediatric patients.

“Majority of our cases involve leukemia, like acute lymphocytic leukemia (ALL), with a high survival rate. Solid tumors are the most common pediatric malignancies – and unfortunately, sometimes, they are detected when it is too late”, Dr. Rigor shares.

Dr. Rigor further stated that a campaign for the advocacy of the Center rests on several key priorities: first, a push for early consultation to aid immediate detection, diagnosis and institution of treatment; second, the education of the general public and further training for other physicians. She says that a clearer picture is needed in assessing patients, noting that some specialists need to be more alert in seeing past symptoms such as fever and infection, and looking out for signs of blood disease.

Difficulties also lie with the patients and the families. “A diagnostic test is costly,” she says, “and there is also the risk of complications from chemotherapy, like infections and the depression of the bone marrow. That’s why we need to supplement direct cancer treatment with proper nutrition and helping to control infection.”

In light of this, Dr. Rigor puts an emphasis on strong psychosocial support for pediatric patients who struggle for their lives every day, as well as their families. She says that forms of the Child Life Program are very much alive abroad, and she is glad that Kythe aims to help children in this way.

“Methods like play therapy are some of the best ways to get through to the kids,” she says. “It’s also important to listen to them. You won’t know about their problems until you listen.”

Dr. Rigor’s dream is for the CHC to be prominent in the country for accommodating children and adolescents, and be a good training ground for young pediatricians to serve the country.

The CHC is proud to be able to work with Kythe in furthering the Child Life Program and extending the fight against cancer.

Last Thursday, February 28, the seasoned Kythe parent-volunteers of the Xavier School Parents’ Auxilliary (XSPA) and the patients of the National Children’s Hospital (NCH), gathered as usual to have a breakfast and enjoy each others’ company over crayons, oslo paper and masking tape.

Thursdays are always something to look forward to– because this is the day that the kids and the parents cheerfully partake in art activities in the playroom, a wonderful way to wind down towards the end of a busy week.

Kythe was first introduced to the students and parents of Xavier School as a ministry endorsed by school director, Fr. Johnny Go, 12 years ago and the volunteer initiative to meet and spend time with the patients has been sustained by the parent-volunteers in the succeeding years. The XSPA Kythe volunteers began their work in East Avenue and have since been based in NCH for the past 8 years.

As there are different ways to be active as members of the Parents’ Auxilliary, such as offering financial support to partner institutions or lending a voice to regular activities on-campus, the Kythe parent-volunteers confirm that being with the kids is their calling, and their involvement is based on dedication, hard work and a deep sense of priority.

The XSPA volunteers also celebrate the holidays from the different seasons with the kids, with special activities being held for Chinese New Year, Valentine’s Day, Easter, Halloween, and even the Mooncake Festival. It is an opportunity to share Filipino-Chinese tradition with the kids, like the Lion Dance which wards off evil spirits and the practice of giving Mooncakes which dates back to the Ming Dynasty.

Aside from sharing a sense of culture, the parent-volunteers express joy in sharing time and in sharing their advocacy towards their own children —  from acting as kargadors to becoming enthusiastic attendees to activities, Xavier students have also opened up to finding ways to reach out to the kids.

A welcoming atmosphere is what the XSPA volunteers will always remember from Kythe, as it is evident in even the smallest ways that the time and effort are appreciated by the kids, who love having playmates of all ages and backgrounds. Developing compassion and understanding in the most concrete ways inspire the parents to go out of themselves and have a sense of purpose as a group. For the kids, the parents immerse themselves in the joys of childhood, and mirror the sense of enthusiasm and togetherness very much needed in the hospital environment.

Kythe’s annual Kythe Flying event, one of the most exciting to begin the year, and spearheaded by the organization’s student arm Kythe-Ateneo, took place in Bellarmine Field, Ateneo de Manila University, last February 16.

Kids from the Kythe affiliate hospitals, along with their parents and respective Child Life Coordinators, watched song and dance numbers onstage, participated in a bracelet making activity, and ended by launching the namesake kites high into the air.

As the culminating event of Kythe Week, Kythe Ateneo’s internals project for spreading the Child Life advocacy internally within the university, the Kythe Flying event also celebrated the theme “SEASons of Love,” visible in the bright ocean-themed decorations and even in the shapes of the kites.

On the choice of theme for the events, Kythe Flying head Gabi Villavicencio shares, “We wanted to have an ‘under the sea’ motif and also spread the love for Valentine’s season, to remind the kids and everyone else that we can stay afloat the waves of life. It’s also a celebration of Kythe’s 21^st  anniversary.”

“What we intended to do was to spread a better understanding of Kythe’s advocacy inside Ateneo,” adds Pamie Cruz, head for the Be Brave Get Shaved and Hair2Share projects. “And we wanted to put special focus on the ideas of solidarity with the kids and community-building.”

One regular addition to the Kythe Week ensemble of activities is the Blood Drive, which the project heads agree that with the aid of the Pre-Medical Society of Ateneo, turned out to be a consistent success, benefiting from more than 50 blood donors.

Be Brave Get Shaved, beginning during the I Am Hope Campaign 2010, was the initiative from Kythe that enabled it to be nominated as a top 20 finalist in the National Youth Commission’s 2012 Ten Accomplished Youth Organizations (TAYO). Boys from the Ateneo community and beyond, as well as one brave girl, lined up to have their heads shaved; on the other hand, the complement for girls, Hair2Share, enjoyed surprising and heartening success. Slots were filled up as a number of girls approached the hairdressers of Teal Salon to offer 8 inches of their hair as bases for wigs, and the hair donations subsequently won the promise of sustained support from Teal in the form of permanent hair donations for Kythe.

Moving demonstrations of solidarity and bravery also came from members of the Ateneo community who had loved ones or even themselves suffered and survived the fight against cancer. Despite not having been able to sign up for a slot, one boy kept returning to the booth, for the members to find out that he had been a cancer survivor; one alumna, after remembering the death of a patient during her brief stay in Kythe, went out of her way to come back to the school to honor both the life of the kid and the prolonged life of her mother, also a survivor.

Student and corporate sponsors also expressed their happiness at being invited to participate in the festivities of Kythe Flying, and aside from giving their donations, also took the time to involve themselves in the sponsored games and booths. Student organization partners included University of the Philippines Ame, the Sector-Based Cluster of the Council of Organizations, the Ateneo Electronics and Communications Engineering Society (AECES), the Health Sciences Society (HSS), the Management Economics Organization (MEco), Ateneo TUGON, Ateneo SPEED, and Kythe alumni. The corporate and non-government organization partners involved were Lions Clubs International Philippines, Fern-C and Provenance Arts and Crafts. In addition, toy donations were given by Universal Rubina Corporation (URC) and Toy Kingdom.

“This is our first time to do something like this,” says Ms. Ingrid of Provenance, who assisted in the bracelet making. “We had fun and it was nice to see the kids happy.”

Off-camera, correspondent Jeremy of media partner IBC 13 agreed that it was important to see the kids enjoying, and that media served its purpose by propagating awareness and, in this case, widening the reach of Kythe’s advocacy to potential viewers.

Perhaps among other things, the kids looking forward to riding high atop the firetrucks assigned to drive around the circular road of Bellarmine Field (this year, courtesy of the Malabon Filipino-Chinese Volunteers), and, of course, flying the signature kites.

“Our kite supplier, Ate Vergie, told us about how fulfilling it was to provide kites for the event,” says Arielle Wang, head of the Blood Drive, with everyone agreeing that the huge, colorful kites had earned the kids’ appreciation.

Seeing the kids run with the kites against the wind, we remember as we celebrate our advocacy every year that they are, after all, the signatures of the organization — like kites, the kids are inspired to soar high through adversity and stay symbols of hope and happiness to all.

Spreading the good news about Kythe through Radio Veritas. Girlie Lorenzo together with Jovy and Bernard, hosts of “Pamilya Mo, Pamilya Ko”.

“Children often times just want their parents to stop and listen”- Doc Angie Sievert-Fernandez during the Kythe Child Life Seminar entitled ” Communicating effectively with children and adolescents” held at Fully Booked Bonifacio Hi-Street.

Kythe together with Joey Velasco Foundation, held a Passion for Caring seminar for the Quirino Memorial Medical Center Pediatric Department last March 26 in Quezon City. “We care for our doctors so they can care for our patients more.”

A BOY suffering from cancer battles through his sickness and enjoys playing with a toy car at the SM City in Pampanga. E.I. REYMOND OREJAS/INQUIRER CENTRAL LUZON

CITY OF SAN FERNANDO— April Anne Palomo was jolly when she began sharing what children do in battling cancer.

“They are brave little warriors,” she told local officials and mall-goers in a program held here early this month before the National Cancer in Children Awareness Month is observed this April.

When she spoke on the need to support parents who care for their sick children, her voice cracked. Near the end of what should be an inspirational talk from this 31-year-old woman, who works as a child life coordinator at Kythe Foundation, she apologized for being emotional. She paused, breathed deeply and regained her composure.

“Don’t lose hope. You are the children’s source of strength,” she rallied parents and grandparents who accompanied 19 children afflicted with various types of leukemia.

Then she appealed for help.

Painful treatment

“The treatment they undergo is long, expensive and painful,” she said, adding that poor families cannot afford the treatment.

From her seat, Herminia Marasigan, a seamstress and grandmother of a 4-year-old girl afflicted with a more deadly form of leukemia, agreed by nodding and crying.

Palomo later joined the children and their relatives for lunch and an afternoon of play, watching a movie and shopping for clothes, all care of SM City San Fernando here.

The Cancer Warrior Foundation and Kythe Foundation help children at Jose B. Lingad Memorial Regional Hospital here and Tarlac Provincial Hospital (TPH) in Tarlac City, respectively.

The Department of Health or private donors provide medicines.

APRIL Anne Palomo, child life coordinator of Kythe Foundation, has embarked on a mission to help children stricken with cancer. E.I. REYMOND OREJAS/ INQUIRER CENTRAL LUZON

Devotion

Palomo, a resident of Victoria, Tarlac, has devoted six years to Kythe Foundation although bigger salaries await her as a registered nutritionist and dietician.

“I find my work at Kythe very self-fulfilling. We’re able to help sick kids,” said Palomo, a mother to two boys.

At TPH, Palomo helps pediatric cancer and other chronically ill patients cope with their fears and pain through play and creative activities during their hospital stay.

She also counsels parents, said Maria Fatima Garcia-Lorenzo, executive director of Kythe that she and Icar Castro founded in 1992.

Mission

On the side, Palomo coordinates with Kythe’s head office on the patients’ medical needs. She assists sponsors and volunteers if they want to improve the hospital’s facilities or if they want to interact with patients.

Since 2007, Kythe has served 6,850 acute patients and 1,672 chronic patients in TPH. In 2012, Kythe provided child life services to 1,482 patients.

“It is not easy working with children who are trying to survive chronic illnesses. I think it has become more than work for April. It is a mission,” Lorenzo said. Tonette Orejas, Inquirer Central Luzon

ABOVE: Sharing experiences with AFP’s very own Ate Aida – Christmas surprises, celebrity encounters, and times of pure joy with the kids of Kythe.

Meet Ate Aida – superwoman of the Armed Forces of the Philippines Medical Center and a pioneer figure in the 20-year-strong legacy of Kythe Inc.

Volunteers know her as the upbeat but no-nonsense guide for their weekly and monthly visits; the kids know her as a friend and confidante, trusting her with important routines in their lives in the hospital’s pedia ward.

Beginning in 1999, Ate Aida has served as the resident Child Life Coordinator for AFP, incidentally the first Kythe-affiliated hospital in the current lineup. A registered midwife, she has found her niche in the company of the patients, where she values fostering a sense of empathy and working hard to gain the trust of the kids and their families.

Her stay in AFP has had its share of remarkable memories, both the good and the bad. She remembers with sadness the number of deaths she has witnessed in the past years, one notable example being the passing away of Kythe kid Juvedeth in 2009, just as she was expecting her 18th birthday and her own debut celebration.

“It fills me with sorrow when one of them passes away, because for the time that they stay in AFP, they become like family to me,” she shares.

Conversely, life among the kids comes with its uplifting moments: she has had the chance to travel with them to places like Enchanted Kingdom and Ocean Park, and explore more of the beautiful attractions within the Philippines, such as the beaches of Dakak in Zamboanga and the Rizal Shrine.

So how is a day in the life of a Child Life Coordinator in AFP?
“In the morning, I do my rounds, I check up on the kids. I also need to ask what activity they want to do – it depends on their mood,” she says, noting that all of kids are of different ages. “You have to be the one to adjust to them.”

Being dedicated to her work comes with its own rewards – in 2004, Ate Aida won the most distinguished award of Model Employee of the Year in AFP, going on to compete as the Luzon representative and win in the civilian employee award division for all Armed Forces-affiliated institutions spanning Luzon, the Visayas and Mindanao. As a more well-known figure in AFP, she would go on to win the title of Model Employee of the Year again in 2010 and 2012, as well as the Model Employee award from the Department of National Defense.

Her inspiration to perform to the best of her ability comes from the patients themselves. “As a Child Life Coordinator, I’m the one who needs to make the kids happy. If you can try to help them when they have problems, somehow they are relieved.

“They are the ones who give me strength. My wish for them is for them to stay strong, be able to face their problems.”