Helping parents face their greatest fear

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.