Parents face up to kids with cancer

Parents face up to kids with cancer

Novan Iman Santosa, The Jakarta Post, Jakarta

Parents expect the usual childhood diseases for their kids, the odd bout with measles or a few days of missing school with a case of chicken pox.

Cancer never figures in the expectations. Mention of the disease is too hard to bear for most people.

For those parents whose children do contract a potentially fatal illness, the shock of dealing with the disease is only part of the problem. They must also devote most of their time to their children's care, face up to the financial drain of treatment and deal with feelings of hopelessness.

It's a double burden for low-income families.

Janem from Tanah Kusir, South Jakarta, broke down when recounting the story of her son, Tri Irwan Haryoko, 7, who was diagnosed with leukemia.

"It was right after the (Islamic holiday) Idul Fitri last December when Tri suddenly looked pale and lost his appetite due to constant nausea," she told The Jakarta Post at the pediatric cancer ward of state-run Cipto Mangunkusumo General Hospital (RSCM) in Central Jakarta.

"At first we thought he was suffering from stomach ulcers because he was fasting during the holy month."

The ulcer medication did not have any effect, and a blood test was ordered.

"It was very depressing when we found out what was wrong with Tri. I couldn't do anything to make it right and it was torture sitting with him in his hospital bed," Janem said.

The family was fortunate to qualify for Kartu Sehat medical assistance run by the local administration as part of the safety net program set up to help low-income families.

In an adjacent bed was Melinda, nicknamed Imel, who was having lunch accompanied by her mother, Sri Kumala, and father, Suwardi.

"Imel is getting better now since she was admitted to the hospital," Sri told the Post.

"Doctors are boosting her appetite so she can gain weight. She weighed 21 kilograms before being admitted, but after several months she has put on five kilograms.

"We've been told that Imel will stay in the hospital for another month, and then we only have to check her condition regularly."

Imel was diagnosed with anemia in January and received treatment, but she had a relapse in April and was hospitalized in Bogor.

Only then was she diagnosed with leukemia and referred to RSCM for treatment.

"I was very sad because we had a neighbor who died after suffering from leukemia. I just don't want this to happen to Imel," said Sri.

Like Janem, Sri said she was grateful to be part of the Kartu Sehat program.

"I am only a driver and without the card I wouldn't know how to finance my daughter's treatment," Suwardi said.

The parents were interviewed on the sidelines of a ceremony dedicating seven renovated rooms for pediatric cancer patients, held by the Indonesian Childhood Cancer Foundation (YOAI) and RSCM on Monday.

The foundation has collected about Rp 200 million (US$24,390) in donations to provide better facilities for children with cancer.

RSCM director Merdias Almatsier said early detection and treatment were important to increase the survival rate of children with cancer.

"Some types of cancer are 100 percent curable as long as they are diagnosed in the early stages," he said at the ceremony.

"That is why we need more pediatric cancer facilities to help more children suffering from cancer."

Head of the hematology section in the hospital's oncology division Djajadiman Gatot said there was no official data on cancer prevalence in the country.

"Worldwide, pediatric cancer accounts for only 2 percent to 3 percent of the cancer population.

"Among children, one out 150,000 children suffers from a cancer."

Djajadiman said RSCM treated 150 to 200 new patients every year.

The foundation's statistics are 140 new children with cancer for every 1 million children under the age of 18 years.

In Greater Jakarta, the foundation predicts that there are some 650 new cases every year and a total of 11,000 new cases nationwide.

"Most of them suffer from leukemia, reaching some 40 to 50 percent of the total number of children with cancer," Djajadiman said.

Lucky Iskandar, 5, is one of the lucky ones. A two-year course of medication and other treatment put his leukemia in remission.

"I am very happy that he is cured from leukemia and only needs regular checkups," Lucky's mother, Siti Hayati, told the Post.

"It will greatly reduce our burden although we still have to maintain his diet and physical fitness. The doctors said Lucky shouldn't get too tired," she added.

Also fortunate is Aditya Trikusumo Putro, 9, who was first diagnosed as having leukemia in Oct. 2000.

"Laboratory tests showed that everything is now normal," Aditya's mother, Ingrid Nolita, said.

She told other parents of children with cancer to remain strong.

"Don't ever lose your faith and keep fighting. I am a single parent as my husband died when Aditya was two-years old. But I fought for Aditya," she said.

"Don't feel ashamed to ask for help, such as applying for the Kartu Sehat or joining any cancer foundation to get additional help.

"One more thing is don't seek alternative medication to cure the cancer while undergoing medical treatment. Most of the time they will contradict each other," she added.