We Are Families Helping Families

Ariyana was only 4 years and 11 months old when she was diagnosed with Neuroblastoma in the right thoracic. Lovingly nicknamed Yana by other mums and Winot by her own, this gentle and soft-spoken little girl from Miri would soon show a strength far greater than her years. Ariyana’s mother recounts their journey:

The First Signs
It began with what seemed like a typical childhood illness — a cough, flu, and frequent fevers. One day, Ariyana was even sent home from school due to her fever. She complained about pain near her right armpit, and the doctors thought it was a lung infection or pneumonia.

She was prescribed tuberculosis (TB) medication, but the pain got worse. We didn’t know it then, but there was a tumour in her chest. The TB medication reacted strongly with it, and the side effects made her condition worse. That’s when the doctors ordered a CT scan.

That scan changed everything. It showed signs of cancer, and we were told to fly to Kuching immediately for treatment.

Challenges During Treatment
Once we boarded the plane, I was told that Ariyana had cancer. It shook me to the core.

I thought we were going to Kuching for only a few days — I didn’t expect the start of a long, difficult journey. I cried the entire flight. A doctor and nurse escorted us from Miri. Ariyana had to wear an oxygen mask the whole way. When we landed, an ambulance took us straight to Sarawak General Hospital (SGH), where Ariyana started chemotherapy right away.

Ariyana in the plane ride from Miri to Kuching, equipped with an oxygen mask during the flight.

And then — as if things weren’t hard enough — I tested positive for COVID-19 the moment we arrived.

Ariyana’s treatment has been intense. So far, she has gone through:
Chemotherapy (September 2024) – 8 cycles
Surgery (December 2024) – tumour removal, done twice
Bone Marrow Transplant (January 2025) at Hospital Pakar Kanak-kanak, Universiti Kebangsaan Malaysia (HPKK) – one month
Radiotherapy (March 2025) – 14 sessions
Immunotherapy (May 2025 onwards)

In the early days, I couldn’t absorb what the doctors were saying. Everything went in one ear and out the other. I had no background in caring for a child with cancer. I didn’t know what blood counts meant, how to read scan reports, or understand chemo schedules.

But I had to learn.

Ariyana was so strong. She handled chemo well, and despite the high-risk surgery (because her tumour was near her nerves), she recovered quickly. Yet, not everything was smooth-sailing. While in Kuala Lumpur for her bone marrow transplant, Ariyana stopped talking to me. She closed her eyes for 24 hours straight. She lost weight until she was only 12kg, and couldn’t eat anything. She was fully dependent on milk feeds through her nose tube, and even that made her vomit. As for radiotherapy, it left her with a sore throat and dry skin. 

Ariyana and her mother, with the doctors and nurses at HPKK.

I felt helpless. I felt shut out. Every single day felt like a week.

A Turning Point
What changed everything was Ariyana’s spirit. Despite the fear and discomfort, her courage never faltered. 

I tried my best to gently explain each treatment to her, offering her words of encouragement along the way. I knew my daughter was scared, but who wouldn’t be in her shoes? Yet, I often found myself encouraged by her strength. Her courage became my courage.

Over time, I started to grow too. With help from other mothers and the Support Services team at the Sarawak Children’s Cancer Society (SCCS), I learned how to care for her better. I began to understand procedures and medication schedules. My daughter has inspired me to become an advocate for thorough treatment, to be more alert and aware of signs and symptoms, and to constantly seek knowledge and solutions. I wasn’t alone anymore.

Ariyana celebrated her 5th birthday at paediatric ward at SGH, accompanied by doctors, nurses and the SCCS team.

Finding Strength in Support
Now, we’re back in Kuching to continue Ariyana’s treatment.  We would stay at the SCCS Halfway Home whenever we were not at the hospital. There, we found more than just shelter — we found family.

The SCCS team welcomed us with love and compassion, providing more resources than we ever imagined:
Monthly financial aid, which really helped as I’m a single mother with five children
Accommodation and transport, which were always comfortable and dependable
Medical education, to help me understand and manage Ariyana’s care
Flight sponsorships, from Miri to Kuching, and to Kuala Lumpur for the transplant
Emotional support and a Parent Support Group, which helped me stay mentally strong

The activities organised by SCCS gave us moments to look forward to—offering comfort and relief throughout this challenging journey. My child felt loved and cared for, and has grown to be playful and comfortable with the staff. We are truly thankful for every staff member involved for making us feel safe and cared for.

Ariyana in a private room, provided to every SCCS resident during their stay.

A saying that has kept me strong is “Nikmat apa yang didustakan,”(which translates to “Which of the favours of your Lord will you deny?”). It expresses deep gratitude and recognition of the blessings received, even during difficult times.

We’ve made deep connections with other parents going through similar journeys. We shared our joys, our struggles, and their children became like my own. Now, I’m able to share the knowledge and experience I’ve gained with other mothers who are just starting their journey, too.

Moving Forward
[Note from the SCCS team:]
After arriving in Kuching, Ariyana and her mum were also assisted with daily necessities and facilities during their stay at SCCS Halfway Home, sponsored flight tickets to and from Miri and Kuala Lumpur, transportation to and from Sarawak General Hospital (SGH), and financial and medical aid.

As of May 2025, Ariyana is scheduled to begin her immunotherapy treatment, which SCCS sponsored RM472,000. The treatment is taking place at SGH, to ensure she has the best chance of survival. SCCS also sponsored a total of RM16,027 for her care that took place at HPKK. 

Mak Ariyana leaves a word of encouragement to all the caregivers going through this challenging time: 
“Accept reality.
Make peace with destiny.
Pray, and stay positive.
Don’t let your child feel sad.
Just take the journey one step at a time.
And remember — you are not alone.
Make friends along the way.”

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