Any cancer is devastating news but it is particularly painful when the patient is a child, and we live in times where children are even born with the dreaded disease.
With the diagnosis comes emotional and, in most cases, financial stress to caregivers of affected children. Sometimes, children are forced to skip treatment simply because their parents are unable to meet the cost of travel to the nearest cancer treatment hospital.
“This is especially bad for families from the low-income bracket who have to travel long distances to Kuala Lumpur for their children’s treatment. In many cases one of the parents may have to give up his or her job to look after the sick child, which causes a tremendous impact on the whole family,” explains Petronilla Joseph (Pat), Home Coordinator of The Children’s Home of Hope (CHH) in Jalan Raja Muda Abdul Aziz, Kuala Lumpur.
“The Home” as Pat refers to her workplace, is part of the National Cancer Society of Malaysia (NCSM).
NCSM was established in 1966 by Malaysia’s first oncologist, the late Dato’ Dr S.K. Dharmalingam, whose vision was to make cancer treatment available to patients at affordable rates. Dr Dharmalingam, head of the HKL radiotherapy/ oncology department from 1962 until he retired in 1982, continues to be remembered for pioneering cancer treatment in Malaysia, but his biggest legacy is possibly the NCSM.
NCSM focuses on providing the best possible care and support to those affected by cancer through care, support and education. It is the first cancer-related not-for-profit organisation in Malaysia that provides an extensive range of cancer services and support to the public.
In 1997 NSCM established CHH to offer free accommodation for children with childhood cancer living outside of the Klang Valley, while they undergo cancer treatment at Hospital Kuala Lumpur.
The “home away from home” concept provides children and their caregivers a comfortable and relaxed atmosphere, away from the hospital environment, which enhances the children’s recovery.
As Home Coordinator, Pat oversees CHH’s entire operations – from staff management, hygiene of the home, visitors, events to donations. With her team of five along with a play therapist, they ensure their home is as comfortable and conducive as possible offering numerous services including laundry, cooking, play therapy and even counselling.
“We are basically the caregivers to the caregivers. I have heart-to-heart talks with the parents to understand their child’s disease and their daily struggles and, on many occasions, become a shoulder to cry on. Sometimes I don’t know what to say to caregivers, especially parents, knowing that their child is terminal. I cried when my first patient died. She was the beginning of many children who died during the course of my three years now. However, many survivors come back to visit us having successfully battled cancer. The smile on their faces bring so much hope and happiness, it gives meaning to my job,” explains Pat, a Business Administration graduate (RMIT).
It isn’t surprising that this young mother of two considers her job more as a calling. As with many Christian families, Pat’s Sundays as a child were spent in church and charity was part of her life – through the Society of St Vincent De Paul – giving out rations and visiting the poor on a monthly basis.
Although she began working life as a marketing executive, Pat went on to work with several NGOs including the National Society of St Vincent De Paul Malaysia, The Yayasan Ozanam and the Asia Pacific Spine Society, working with the sick, HIV/Aids patients, orphans, single parents and financially struggling families.
Her real ambition however was to become a doctor but that changed after a visit to the paediatric oncology ward in HKL (children’s cancer ward) when she was 10. “I met a child with leukaemia, he was dying and we were of the same age. I was afraid of death and couldn’t understand why God chose him to suffer and die. That experience left a deep scar and I dropped the idea of being a doctor.”
Her ambition may have been thwarted by fear of cancer but life was not about to allow Pat from moving too far away from it!
“It has finally dawned on me that life has come a full circle. I’m back to where I dropped off and ran away from “cancer’ where now I am tasked on a daily basis to care for children with cancer.”
Pat is quick to give credit where due. “To me the backbone of a well-managed institution is the staff and I’m grateful to have a wonderful, cooperative team. Each one goes out of their way to offer support to all the patients. They work very hard on rotation 24/7 and yet they do it with a smile that’s both welcoming and heart-warming to our patients.”
Volunteers too are required for various activities, most important of which is to simply spend time with the children, whilst caregivers get some respite. Pat explains that it can be heart-wrenching to see the exhaustion on caregivers’ faces – who don’t have much breathing space, let alone time to take care of their own well-being.
“To stand more than 10 minutes in a shower is a luxury. To take a short nap is not easy for caregivers with babies so at NCSM we aspire to give caregivers the support and care that they so desperately need and deserve. To give them the energy to continue fighting with their loved ones.”
Pat admits that her job is a hard road to traverse.
“The emotional challenges are numerous – when a child passes away, when a caregiver breaks down, when there is an emergency to rush a critical child to the hospital, when a child is in ICU on the brink of death…It is easy to say “I understand what you are going through”, but really we don’t have a clue.”
The silver lining?
“You build lasting relationships with each one of the patients and their families. I now have extended families in every state in Malaysia who I know will welcome me into their homes. My staff also experience the same – it keeps us strong and gives us purpose to continue to serve in CHH.”
Service-oriented, enterprising Pat has also managed to bring in sponsorships in kind and cash to help sustain the CHH. This includes securing sponsorship for a brand-new vehicle to be used as the CHH’s hospital shuttle and a grant from a well-known American rock band.
She has also successfully mentored and supported a CHH patient’s mother to help start a parents’ support group in Terengganu. It is a breakthrough for NCSM in general to have made meaningful connection with the cancer community in the east coast, where more awareness campaigns and activities are now in the pipeline.
Pat signs off with the kind of hopeful, open smile that comes off easily from angels amongst us.
For more details, Pat can be contacted at email@example.com or call 03-26981676.