On the day we visited one of the volunteer mothers standing by told us of a little boy who had painted grinning Japanese comic-book character Doraemon, and underneath it the words “DON’T GIVE UP!” People were so moved that a photo of the artwork had been posted on the Mary’s Cancer Kiddies website.
Mary’s Cancer Kiddies is a non-profit organization that aims to amass funding for cancer-afflicted children from poor families in two of Jakarta’s main children’s cancer hospitals: RS Dharmais and RS Ciptomangunkusumo. It began as an informal fundraising scheme established by Mary Binks.
“From one day to another I didn’t know where the money would come from,” she said. “But I found people really wanted to give.” Today, corporate and individual sponsorship pays for the chemotherapy and radiation treatments of over 180 children in both hospitals. However, funding is just one facet, and cancer treatment is never a textbook process.
Keeping the children in high spirits is part and parcel of the curative regimen, and that is where volunteers step in and doctors and nurses become not only medical practitioners but confidantes, playmates and if worse comes to worst, makeshift undertakers.
Death is an everyday reality, particularly when patients are brought to the ward when the cancer is at an advanced stage, which used to constitute 43 percent of cases. Through cancer awareness campaigns via television and the media, and a 22-page book penned by Dr. Edi, called Kenali Kanker Anak (Understanding Childhood Cancer), parents are less loath to investigate a suspicious lump or telling bruise.
The doors to all the patient rooms in the ward are thrown wide, curtains parted to admit sunlight. Little Febriana, aged seven, was returning to her room after a short walk in the hospital grounds. She had a tumour in her brain that had been operated on twice, but the crown of her head still showed a perceptible engorging. Julie, an MCK volunteer, approached her bedside without fear.
“What’s your name?” she asked. The child thought for a minute.
“My name is Febriana,” she intoned in perfect English. “
How old are you?” Febriana smiled in embarrassment.
“Do you remember your numbers?” Julie coaxed. “Lupa.” The tumour’s minimal response to the operation meant that Febri would need to resort to using Temodal, a drug that retails for Rp1.6 million per pill. But MCK is sparing no energy to collect the wherewithal, even though the drug cannot cure the tumour, only dull the pain. Julie tucked the child’s sheets in and turned to leave with a final note.
“Sem…” she paused. “What do you say? Semangka?” Julie said, accidentally using the Indonesian word for "watermelon."
“Semangat!” We corrected her, meaning “stay strong.” Febri raised her tubby hands to cover her mouth, but not before a yelp of laughter could escape.
“Sorry! Lupa lagi!”Julie cringed, amid giggles from the children. The parents had turned to look and fora moment the room was electrified with communion, shared laughter providing momentary succor.
A few beds away was Payoga, who said his shoulder was achingfrom being injected for the intravenous drip. He was clutching a PSP and answered Julie’s questions with a sullen nod or shake of the head, eyeing her warily; but when she got up to leave to attend to another child, I saw a disappointment cloud his features.
How does a doctor convey the concept of death to a child whois yet to master the alphabet? “We tell them stories,” says Dr. Edi Setiawan Tehuteru, the ward’s pediatric oncologist, who doesn’t shy from telling a child he is in mortal peril. “The child has the right to know about his or her disease. With a two or three-year-old child, we tell them there’s a monster inside of their body.” And how to soothe their fear of all the needles, tubes and syringes?
“We ask them, do you know Superman or Batman? Now we have ChemoMan!” One of the volunteers who is also an illustrator, created a book that pares down the complexities of the disease into kid-size pieces. “You have to use media to explain it because they’re children,” says Dr. Edi.
Cancer-stricken children seem to be blessed with an integrity and patience which healthy children may not have. “The young children aren’t afraid to die,”says Dr. Edi. “Their fear is, if I’m not in this world anymore, who’s going to take care of mom?Who’s going to accompany mom to the market? That’s what they’re afraid of.”
In spite of the government-sponsored healthcare system, even the poorest families can fail to qualify. The red tape, hefty paperwork and ultimately conditional aid dissuades parents from even filing for their children; and when it comes to cancer, the clock is ticking. Families would pawn their belongings to finance just one more chemotherapy or radiation treatment that might extend a child’s life by a few weeks, a few days or not at all. “My philosophy in taking care of the children is that every patient is my child, too. So as a parent I will do everything for my child,” confides Dr.Edi, who has been known to foot the bills of patients whose families could not afford it.
He tells me of a young patient from Australia who was diagnosed with neuroblastoma, and whose only wish was to go to school. Without hesitation Dr. Edi phoned the school principal and told him, “This child is going to die. She doesn’t need good grades to go to heaven. Just make her happy.” The four-year-old, whose cancer had attained Stage 4, lived for another year. “When the time comes, the child must have a good quality of death. That is what palliative care is about.”
Beset by cancer so early in life, children turn out to be the hardiest fighters. However, if cancer is left untreated, even the most persistent little soldiers eventually fall. “Every child deserves a chance”, asserts the slogan of non-profit organization Mary’s Cancer Kiddies. For a cancer-afflicted child, “chance” takes on a double-edged meaning. He may only be lucky enough to have a chance to fight, or he may pull through and have a chance at life. Regardless of the outcome, every child should have that chance.
