NOT many know the pain parents go through when their child is diagnosed with cancer, other than parents who have gone through the agony themselves.
Kumpulan Ibubapa dan Sokongan Anak-Anak Kanser KK3 HKL (HKL Kids) president Hamidah Tajudin recalled that day in 2012 when her youngest child, then aged seven was diagnosed with leukaemia.
“It was the saddest day of my life. My son had already been through a lot. He was born with Down syndrome and had a hole in his heart.
“He had to go through heart surgeries when he was still a baby. Despite his disability, he is a smart kid and learnt to read by the age of five.
“So, when I received the dreaded news, my world came crashing down.
Hamidah (second from left) and other members of HKL Kids believe that parents in similar circumstances should support each other during tough times as they could relate better.
“I was sobbing throughout the journey in the ambulance as my son was urgently transferred from Putrajaya Hospital to Hospital Kuala Lumpur (HKL), one of the few government hospitals in the country with treatment for children with cancer,” she said.
Since then, Hamidah said the hospital became her second home. Moving in and out of the hospital became the norm.
She tries to stay strong but on some days, she isolates herself in a room to cry her heart out.
After a series of treatment and chemotherapy, her son showed progress and was given a clean bill of health. However, he had a relapse last year.
“We are back to going in and out of the hospital now.
“I am a much stronger person now but I still remember the mental anguish I suffered when my son was first diagnosed.
“I was lost and in an emotional whirlwind. I am thankful that I have my family for support.
“In the hospital, I see many mothers going through the same and I can’t bare to just watch. So, I am determined to help,” she said.
Hamidah said coping with staying in a hospital was mental torture.
“Imagine being confined to a hospital room with your child for weeks to months on end.
“It is stressful for the parents as well as the child who has to undergo painful treatment at an age when they are supposed to be enjoying their childhood.
“Many also come from out of town and rely on hospital food which is very bland.
“There is a common TV and some bring radios, smartphones or tablets for entertainment.
“Older children usually have game consoles and those who cannot afford it yearn for one to get them through the days.
“But the worst pain is the feeling of not knowing if your loved one will ever be cured.
“At the hospital, we also face a lot of negativity such as patients losing hope and news of death.
“So, we parents must support each other through these tough times and that is how HKL Kids was established. It was registered in January last year,” she said.
Hamidah said many of the parents were also burdened with financial difficulties.
“Some mothers give up their jobs to care for the child.
“The family income reduces but expenses increase as treatment can be costly, even in Government hospitals.
“There was a mother who only had RM5 in her purse when her child was admitted.
“I do what I can and pool money from friends and relatives to help these parents.
“I also give out admission kits with basic toiletries and items from sponsors to ease their burden. As for the children, I try to bring cheer to them in the ward.
“We try to bring in companies, organisations or individuals who can contribute to the children or parents in any way.
“Some of the latest initiatives saw Ultraman and Spiderman characters visiting the children.
“Since the children have low immune system, they are unable to go out to public places freely.
“So, we get sponsors to organise special trips to places like Aquaria KLCC and the National Zoo to accommodate their needs.
“My husband Professor Dr Shukri Mohamed, who is also HKL Kids adviser, made a Ninja figure out of a cardboard box to entertain the kids.
“Sometimes, all the parents need are good food, some activity and someone to talk to,” she said.
Hamidah, who lives in Bangi, Selangor, tirelessly makes her way to HKL when a new patient is admitted not just to hand out an admission kit, but to give encouragement, comfort and advice.
Those who would like to know more or lend a hand can visit the HKL Kids Facebook page at www.facebook.com/KK3parentssupportgroup/