Helping parents face their greatest fear
Hera Diani , The Jakarta Post, Jombang, Banten
We don't expect our children to die before us -- it's not supposed to be that way.
It's a fear that shadows the parents of children with cancer who attended a special "cancer camp" for needy patients held here recently by the Indonesian Childhood Cancer Foundation (YOAI).
At the recreational field, some 100 or so children played games and sang songs, led by the foundation's volunteers. Some appeared healthy, while the rest were bald from chemotherapy treatments and looked weary.
Their parents, meanwhile, watched with obvious concern despite taking pictures or cheering them on.
Merry Sianturi, 31, said that she felt that life was playing a cruel trick on her when her seven-year-old son Nicki was diagnosed with leukemia. That was three years ago when Nicki was only four.
"It was very difficult for me to have a baby. It took me three years to finally get pregnant. I did hormone therapy, I went to Bandung (West Java) to find treatment. When the doctor said my son had leukemia, I said 'Why God, why?'" said Merry, a librarian in a South Jakarta private elementary school.
At first the doctor had said Nicki was fine despite a fluctuating fever lasting two weeks. However, his condition worsened and laboratory examinations showed Nicki had leukemia.
"Doctors said that the cause was too complex. It could be pollution, genetic or a chemical reaction," Merry said.
The painful journey of treatment then began: A 12-week hospitalization, in which there was an incident of mistaken blood transfusion, and chemotherapy with its terrible side effects, such as nausea.
In between, Merry had to witness one child patient after another lose their battle against the disease, wondering whether the same fate would befall her child.
Another problem is money. Her salary combined with that of her husband who works as a music teacher in the same elementary school were far from enough to finance the medication.
During the stay in the hospital, Merry had to obtain cancer drugs four times a week, each dose costing Rp 1.8 million (US$225). That did not include helper drugs, and consultation fees.
She then obtained a letter from the City's Social Welfare Office providing notification of her family's poor financial condition, and was able to secure some financial assistance.
Fortunately, there have been helping hands, including from the foundation, her church and the school where she works. Now Merry and her husband pay some 10 percent of the medical costs.
"Luckily, my son is strong so we could go home after three months. But the medication still continues until now: Regular blood checks, chemotherapy every five weeks, and so on. The doctor said that there is hope for a full recovery, but we have to see for another five to six years."
Data from YOAI shows that the prevalence of childhood cancer worldwide is approximately 140 new patients annually for every one million people below 18 years old.
In this country's population of over 215 million people, the incidence of childhood cancer is about 11,000 new cases every year.
The capital, meanwhile, sees an increase of about 650 new patients every year within its 12 million population.
According to YOAI chairperson Rahmi A.P. Tahir, only about 250 of the child patients seek conventional medical treatment, due to financial constraints or a preference for "alternative" treatments from shamans or paranormals.
"I understand that the medical costs are really high. But there are also many people who just don't trust doctors. Also, a lot of people are not aware that cancer is actually curable (when diagnosed in its early stages). Many parents give up when they found out that their children are afflicted," said Rahmi whose child, now healthy, was once a cancer patient.
Along with eight other mothers -- six of whom had children with cancer -- she established the foundation in 1993, with one of its main objectives to help patients from low-income families.
Aside from fundraising, the Foundation also hold seminars, workshops and courses for professionals and paramedics, and the general general.
Since 2001, YOAI has shouldered the cost of supporting cancer medicine for poor patients, reaching 168 children in the greater Jakarta area.
"I see that awareness of childhood cancer is increasing. Initially, the patients seeking help from us were already in an advanced stage of cancer," Rahmi said.
The foundation also conducts the cancer camp twice a year, and it has a support group for parents, which many find helpful in dealing with stress.
"I'm now really close with other parents, even when their children have died. But we support each other and that's really something," she said.
Inggrid Laurita, 50, drew on the support when her son Aditya, 9, suffered several relapses.
"I've been through emotional ups and downs. When it seemed that my son was getting better, his condition dropped again," she said, adding that he is now pretty healthy.
The children themselves look forward to the fun and games at the camp, like 12-year-old Wilianto Setiadi, who had a cancer of the nose and neck.
"I like going to this camp, and playing with other kids. I often cut school because of chemotherapy," he said, pointing to the angular bald patch on his head, and the long row of surgery stitches on his neck.
Despite the adverse physical effects of chemotherapy and the financial problems that hit his family, soft-spoken Wilianto looked content and mature.
His only complaint is that he cannot do sports at school.
"I want to be a doctor," he said, looking into the distance.