One can never tell just by looking at 8-year-old Mak Lucky Joe Refuerzo that the chubby, slit-eyed kid has been battling the Big C since age three. It is a battle mostly waged in muted cries and constant pain.
Yet for a couple of hours that morning, Refuerzo and 24 other children with cancer formed an attentive audience who followed the plot, picked up moral lessons and erupted in cheer. Some laughed behind their face masks.
An Inquirer Read-Along session was held on Friday for these patients from the National Children’s Hospital and University of Sto. Tomas Hospital, featuring a book especially written for young cancer warriors.
The day’s story was titled “Kapitan Kimo,” a tale that provides child-friendly information on the value of chemotherapy.
It tells of an upheaval of microscopic proportions: The title character is a syringe who rallies an army of cells against an “invasion.” Their mission is to protect their village called Barangay Kat-Awan (a play on the Filipino term for “body”).
Present at the session was the author, Allan Cabisaga, a US-based nurse who had used the story to “distract” his child patients from the pain of injections during chemotherapy. Having a syringe as his fictional hero, he said, would hopefully make the children “less afraid” of the real thing.
Held in partnership with Kythe Foundation, a nonprofit group that extends psychosocial care to children with chronic illnesses like cancer, the Nov. 11 session had GMA-7 personalities Lexi Fernandez and Derrick Monasterio as storytellers.
(Kythe is a Scottish word which means healing through simple sharing and togetherness.)
“The story taught me that I should really take care of my health, eat more nutritious food, and sleep early so that I can help fight my cancer,” said Refuerzo, who has been diagnosed with leukemia.
‘They can be cured’
“I like the positive story and how it teaches children that their sickness can be defeated, that they can be cured. It is a good tool for us parents,” his mother Nandita added.
Another parent, Grace Tagoy, said she found the session very helpful since it taught the children “not to be afraid of chemotherapy.” Her son Sherwin has brain cancer.
Both first-time Read-Along storytellers, Fernandez and Monasterio admitted they were a bit nervous about their roles that day. (The two Kapuso talents appear in the teen-oriented serial “Tween Hearts” and noontime Sunday show “Party Pilipinas.”)
“I practiced reading before the session. It was a different scenario for me but I am happy to be able to help the children in any way. I enjoyed the company of the kids and I hope that we were able to help them feel better,” Monasterio said.
“At first I thought it would be a bit difficult especially because the material was pretty serious. But I found the story very child-friendly and very helpful,” added Fernandez, whose actress mother Maritoni also fought breast cancer.
Educating parents
Dr. Angie Sievert-Fernandez (no relation to Lexi), counseling psychologist and manager of Kythe’s Child Life Program, started the session with a briefing about cancer, defining some basic terms and using an instructional doll made especially for kids in therapy.
“I think we were able to simplify the concepts so that even the younger ones would understand the story. It was a good opportunity to educate the parents as well, to explain what their children are going through,” Dr. Fernandez told the Inquirer after her talk.
Kapitan Kimo author Cabisaga arrived in Manila from the United States the night before Friday’s session. The affair actually allowed him to see his book for the first time, after Kythe agreed to be its publisher and kept him updated on the project through e-mail while he was in the US.
“I noticed there was no Filipino book about chemotherapy, so I wrote my own story that I can use with my patients,” said Cabisaga, who previously worked for Kythe as a child life specialist for 11 years.
“We want the kids to be less afraid of syringes,” he explained. “We want to put them at ease.”
Fighting bad cells
Cabisaga recalled that during one of his bedside storytelling sessions with a patient, he observed that the child was closing his eyes as he listened.
Worried, Cabisaga asked what was wrong. “The child said he was just imagining Kapitan Kimo fighting the bad cells in his body,” he said.
According to Dr. Fernandez, “it has been observed that children who are less nervous during treatment exhibit more progress.”
Teary-eyed
At his turn to speak to the kids during the session, Cabisaga got emotional and teary-eyed: “I missed working with kids. When you work with Kythe, it’s a really great feeling. I think this is my calling.”
Jomike Tejido, the book’s illustrator, said he was particularly “glad that there was an actual demonstration where the kids are taught how to do the Kapitan Kimo toy (as indicated) at the back of the book.”
Tejido was referring to the activity held at the end of the session wherein the kids were asked to make their own Kapitan Kimo paper dolls with the help of their parents and the two storytellers.
“Just seeing the kids enjoy doing the toy was really a big thing for me,” said the artist, who attended the session with wife Haraya and their 1-year-old daughter Sophia.
Normal childhood
Kythe president Gerrardo Bacarro found the session “very inspiring and encouraging” and said “programs like these really make a difference in the lives of these special children.”
“Hopefully the story will help them cope with their situation better. We thank the Inquirer for having the heart to help the kids. I hope that this will be the start of a great partnership with Read-Along,” Bacarro added.
Executive director Maria Fatima Garcia-Lorenzo agreed, saying Inquirer Read-Along and Kythe have “a shared vision and a shared value to promote education and reading even for underprivileged children.”
“We think that it is very important to give them a semblance of a normal childhood. Their bodies may be weak, but it does not mean that their minds are not strong,” Lorenzo said, noting that most of the afflicted children were out of school.
The Nov. 11 session was hosted by Dr. Fernandez and Inquirer Libre editor in chief Chito dela Vega, and organized with the help of Kythe communications manager Milette Belen and GMA 7 talent coordinator Marian Domingo.
The children also received gift packs courtesy of GMA Films and the team behind its latest production, “The Road.” Reports from Marielle Medina, Kate Pedroso, Schatzi Quodala