KUCHING, July 20 — What began as a complaint of chest pain from an eight-year-old boy turned into a life-altering diagnosis that changed the entire course of a family’s life.
For Cynthia Nelson, 30, her son Bryan Jackbon, now nine, was diagnosed with rhabdomyosarcoma (RMS) after being referred from Sibu Hospital to the Sarawak General Hospital (SGH) last year.
LMS is a rare and aggressive type of cancer that originates in smooth (involuntary) muscle cells.
Bryan, the eldest of four siblings, was diagnosed after scans revealed abnormalities in his lungs, leading doctors to conduct immediate investigations including CT scans.
“After the CT scan, the doctor told us it was confirmed cancer. At that time, we did not even know what type yet, only that it was serious,” she told thesundaypost here.
Bryan was immediately transferred to SGH, where treatment began almost instantly, including the insertion of a central venous device (CDA) and emergency procedures.
At the time of diagnosis, Cynthia had just completed her confinement period after giving birth to her youngest child, who was still being breastfed.
“I had to take care of two children at the same time: one sick child in Kuching, and a newborn at home (in Sibu).
“I was pumping breast milk while staying in Kuching, and my husband would come every two weeks to Kuching to collect the milk,” she said.
The emotional and physical toll was compounded by the demands of caring for four children: eight-year-old Darren, six-year-old Favien, and one-year-and-three-month-old Hyden.
Her husband, Jackbon John, 30, a personal assistant at the Independent Living Centre (ILC) in Sibu, supported the family by caring for their other children while Cynthia focused on Bryan’s treatment.
Bryan underwent an intensive chemotherapy regimen, beginning with four cycles of high-intensity treatment in Kuching, followed by five additional cycles before continuing maintenance chemotherapy at Sibu Hospital.
“In Kuching, he had nine cycles in total.
“In Sibu, he continued with maintenance chemotherapy for about six months, with three treatment sessions every week and another one week resting.
“So that means, 18 times of chemotherapy in Sibu within that six months,” she recalled.
She described the treatment as ‘physically and emotionally demanding’, necessitated by frequent hospital visits.
One of the most poignant moments occurred after one of Bryan’s operations, when he quietly asked where heaven was.
“I told him heaven ‘is a beautiful place’. I said ‘if you ever see it, you can go there’.
“As an eight-year-old asking me that at that time, I was shocked,” she said, describing the heartbreaking conversation as one of the most difficult experiences of her life.
Throughout the journey, the Sarawak Children’s Cancer Society (SCCS) played a critical role in supporting the family.
Cynthia said SCCS provided monthly financial assistance of RM450, accommodation at the SCCS centre in Desa Wira in Batu Kawa, transportation, basic necessities such as milk and nappies, and emotional support through activities for the children.
The SCCS centre or halfway home is equipped with kitchen access, allowing parents to prepare meals during long stays in Kuching.
“Everything was provided there. We only needed to focus on taking care of the child.
“Milk, diapers and transport – they’re all arranged. It really reduced our burden,” said Cynthia.
The family also received assistance from the Welfare Department (JKM), which helped ease financial pressures during Bryan’s prolonged treatment.
Cynthia admitted that the fear of relapse remains a constant emotional burden, as childhood cancers require long-term monitoring even after successful treatment.
“There is no moment where you feel completely at peace. Even after treatment, the fear is still there because it can come back anytime,” she said.
Despite this, she remains focused on Bryan’s recovery and emotional well-being, choosing to stay strong for her children.
“If it comes back, we will fight it together.
“That is all I can tell him,” she added.
As SCCS marks its 25th anniversary this year, Cynthia hopes for greater public understanding of the realities faced by families dealing with childhood cancer, from financial strain to emotional exhaustion.
“I had to stop working to take care of my child full-time. Not every family can cope with this.
“More awareness and support are needed,” she said.
She added that treatment costs for childhood cancer could reach hundreds of thousands of ringgit, particularly in severe cases requiring transplant procedures.
SCCS has supported about 1,700 families over the past 25 years, and spent approximately RM20 million on children and their families.
Its halfway home in Desa Wira currently has 14 rooms, and the organisation plans to include additional ground-floor rooms for wheelchair-bound patients.
About 40 children and their caregivers stay in the facility each year.
It opened a second halfway home in Miri in early 2016, which has three rooms and is able to accommodate five patients and their caregivers.
Earlier this month, DefyLAB Fitness and Wellness hosted ‘Move for Gold’ a charity programme in Kuching, that included the ‘GoBald’ event – the organisation’s flagship annual fundraising campaign where participants shave their heads in solidarity with children battling cancer. — The Borneo Post
