Kartini (left) with Stephanie and their parents before the latter’s cancer diagnosis.
MIRI (May 1): This year, ‘Courage’, ‘Faith’ and ‘Joy’ are chosen as slogans representing the cancer-fighting journey endured by young patients and their family amid the challenges and tribulations.
Even as adult, being informed of cancer diagnosis can impact one’s emotions – the fear that comes with the cancer, let alone those who have to fight cancer at such a young age.
Stephanie Ngian Robin, a 10-year-old from Bintulu who has so much to anticipate in life, was delivered the devastating news in December 2021, after experiencing frequent and long headaches at the back of her head.
Aside from headaches and vomiting that followed soon after, Stephanie started losing weight and became very weak. Her condition worried her parents and she was brought to many clinics to get checked on.
The results, however, were inconclusive and finally, they went for a Computerised Tomography (CT) scan and an X-Ray test at Bintulu as a last resort.
“After that, we were referred to Miri Hospital for a Magnetic Resonance Imaging (MRI) scan, where they diagnosed Stephanie with Medulloblastoma,” said Kartini Robin, Stephanie’s elder sister.
Medulloblastoma is a cancerous brain tumour that starts in the lower back part of the brain. Although it is rare, yet it is the most common cancerous brain tumour in children.
Medulloblastoma patients, if detected early and with proper treatment, can have a five-year survival rate of over 70 per cent.
Finding courage in the face of adversity
The news was devastating to the family, especially when doctors told them that the tumour needed to be removed.
“But our family was very sceptical of putting Stephanie through the operation and we went home instead and resorted to medication, painkillers and traditional medicine.
“Turns out, the decision to protect Stephanie had instead negatively affected her. Her condition did not improve after a month, and her tumour was spreading aggressively.
“We were told that emergency surgery was needed, so we decided to follow the doctor’s advice and let her undergo the surgery at Miri Hospital to remove the tumour.
“Despite the sudden news, my sister was so receptive and took it with such courage. Seeing us all worried for her, she even assured us that everything would be alright.
“She really has the mindset of a fighter,” said 17-year-old Kartini.
After the surgery, Stephanie was admitted to Sarawak General Hospital in Kuching for further medical observation and follow-up treatment.
Kartini volunteered to look after her younger sister as their father needed to be back in Bintulu for work and care for their mother who has a medical condition.
Being a carer to her sister and without immediate family members by her side taught Kartini to be independent in navigating unfamiliar territories. She too learned to be a fighter.
Stephanie experienced different complications during her treatment that forced her to stay in the ward for 14 months. Seeing her sister fighting cancer and facing uncertainty, there were moments when Kartini faced the fear of losing her sister, after Stephanie told her that she had lost all hope in getting better.
“When someone in your family has cancer, you are just wrapped inside this bubble of anxiety and worry. No matter how hard you try, you cannot seem to break out of the bubble.
“Her words broke my heart. That’s when I knew that I had to stay positive and strong to get both of us through this obstacle together.”
Kartini was very grateful that the medical team and staff of Sarawak Children’s Cancer Society (SCCS) at the paediatric ward became one of their strongest support systems, providing words of encouragement and support when in need.
Coping with cancer as a community
Kartini recalls vividly last year was the hardest year for her family, as Stephanie was in the Intensive Care Unit (ICU) due to medical complications and even celebrated her ninth birthday while there.
Though she wasn’t able to be there with her sister, SCCS staff and the ICU team threw her a surprise Frozen-themed birthday party.
“I could see from the pictures how happy she was. During that time, SCCS also provided me with accommodation at their halfway home in Kuching,” said Kartini.
SCCS has supported Stephanie to the tune of over RM75,000 to help in her cancer-fighting journey, including sponsorship of medical consumables worth about RM1,500, financial aid totalling about RM6,300, as well as the provision of a care pack and diapers to ease Stephanie’s life at the ward.
In January this year, Stephanie was finally allowed to return home after completing her intensive treatment of more than a year in Kuching. However, as she requires a ventilator at home to help her breathe, SCCS purchased a portable ventilator costing RM65,000 for her home usage.
SCCS also funded an ambulance service costing about RM2,400 to transport Stephanie home safely due to her limited mobility. The journey home took about seven hours.
In addition, the SCCS staff organised a farewell party to celebrate the milestone with the medical team, as part of their well wishes for both Stephanie and Kartini.
SCCS staff and medical team held a farewell party for both Stephanie and Katrini to wish them all the best before they returned to Bintulu after Stephanie’s year-long treatment at SGH, Kuching.
“You cannot fight cancer alone, and because of the support we get from our family, medical team and SCCS, both Stephanie and I remain hopeful that she will get better one day, despite the critical condition she is in.
“We didn’t think that we have the biggest problem, and there are more people out there who are in far worse condition than us,” Kartini shared.
Since returning to Bintulu, Stephanie continues to fight every day in winning the cancer battle at Bintulu Hospital.
Fighting alongside cancer-inflicted children
As a non-profit organisation, SCCS relies on public donations from its monthly donation programme, corporate social responsibility (CSR) projects and annual campaigns such as GoBald to support about 150 to 200 families throughout Sarawak, with their annual expenses rounding up to about RM2 million.
This year, GoBald targets to raise RM1 million and shave 350 heads. With its theme ‘Dare to Dream’, it aims to encourage children with cancer and childhood cancer survivors to have the courage to dream big, look ahead with optimism and set long-term life goals. The funds raised from GoBald 2023 will help ensure children with cancer like Stephanie get access to integrated and improved care, treatment and facilities they need to get better to pursue their dreams.
Participants who wish to shave their heads and raise funds to help kids fight cancer can register at https://bit.ly/30GF9bP. All donations are eligible for tax exemption.
For the latest updates on GoBald 2023, follow GoBald’s Facebook page @GoBald.
SCCS’ Go Bald 2023 Campaign is back and it will happen on June 11, 2023 from 1.30pm to 7.20pm at Permaisuri Imperial City Mall.
from Borneo Post Online https://bit.ly/428mthR
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