Edeva

Hailing from Kuching, Edeva was born into a family of athletes. Her siblings were both gymnasts who proudly represented their schools, and she was gearing to follow in their footsteps as soon as she started school. Her mother recounts their story:

The First Signs
Edeva, my youngest child, was always a bright and cheerful little girl, especially around her siblings. But one day, she started complaining of persistent headaches and began vomiting frequently. Her appetite decreased, and she often looked weak, lying down for long periods. I also noticed her walk became unsteady, and even when she sat, she swayed from side to side.

One day, I saw that her eyes had become misaligned—she looked cross-eyed. Yet, she never had a fever, only severe headaches.

Worried, I immediately took her to a specialist clinic. The doctor mentioned that headaches were rare in children and prescribed Panadol before sending us home. That afternoon, as I dropped off my older children at their gymnasium training, I received an urgent call from my mother. She told me that Edeva had become very weak and needed to be taken to the hospital.

My father rushed her to the emergency department at Sarawak General Hospital (SGH), and I met them there. However, due to a full ward, they couldn’t admit her, and once again, we were sent home with only Panadol.

The Diagnosis
After a few days, Edeva seemed to improve slightly, but then the headaches returned—this time even worse. We took her to Klinik Khaira, where the doctor immediately referred her to a pediatric specialist at SGH. She was admitted, and while her initial blood test results came back normal, we were told she needed a CT scan.

Late that night, around 10 PM, the scan was performed. The next day, a doctor approached me with the results, comparing Edeva’s brain scan to that of a healthy person. My world went dark. My four-year-old daughter had a tumour the size of a tennis ball growing in the middle of her brain, just behind her eyes. An MRI was needed to assess it further.

The diagnosis was confirmed: Medulloblastoma. The MRI results revealed that the tumour was high-risk. Surgery was necessary, but it carried significant side effects. Yet, without the operation, the tumour would continue to grow, worsening her condition.

Edeva spent 12 hours in the operating theater. I was told that if anything happened, they would call me. Every time my phone rang, I felt my heart stop, terrified of receiving bad news.

When the doctors finally emerged, they told me they had managed to remove 60% of the tumour. However, excessive bleeding forced them to stop the surgery. Edeva had lost a lot of blood and needed close monitoring in the ICU.

Later that day, I noticed a missed call from SGH. My heart pounded as I listened to the message—there had been an emergency. The bleeding in her brain had worsened, and she had to undergo another surgery. During this second procedure, they successfully removed 90% of the tumour.

Facing Challenges
After surgery, Edeva began chemotherapy and radiotherapy. This was one of the most challenging times for our family.

Her mobility was severely affected—she struggled to sit up, let alone walk. I had to stop working to care for her, and without an income, our financial situation became dire. I couldn’t leave the hospital, as she needed constant assistance. I missed home terribly, and my parents had to take care of my other two children.

Finding Strength in Support
One night, as Edeva slept in her hospital bed, I sat beside her and cried. I blamed myself for not noticing the signs earlier. Other mothers in the ward saw my distress and came to comfort me. Their kindness reminded me that I wasn’t alone.

The team from the Sarawak Children’s Cancer Society (SCCS) was also a big help. They provided emotional and financial support, offering counseling sessions and essential supplies like diapers and milk powder. Their presence helped me cope with the overwhelming emotions I was experiencing.

Shu Shan, the SCCS support services counsellor, became a dear friend. She shared, “Mak Edeva is very sociable and always open to sharing her journey. Though Edeva hasn’t learned to talk much yet, she expresses herself so vividly. She loves playing our cooking game, and I always call her ‘Bestie,’ greeting her with ‘Hi, Bestie!’ whenever I see her.”

She also noticed the small ways I tried to keep my daughter’s spirits up. “Her mum always gets her pretty outfits and shoes to encourage her to walk more, now that she’s slowly recovering,” Shu Shan added.

Despite her health struggles, Edeva found joy in watching Kaycee & Rachel, her favorite YouTube channel. It became her little escape, bringing smiles to her face during tough days.

Moving Forward
Today, Edeva has successfully completed her 30 sessions of radiotherapy and was able to go home and rest for two months before starting the chemotherapy treatment, a process expected to last around eight months.

I have since returned to work, while her grandparents take her to follow-up treatments at the daycare centre. Though the journey is long, I remain hopeful. Every small improvement she makes fills my heart with gratitude.

I am endlessly thankful for the support we have received—from SCCS, from fellow parents in the hospital, and from my family.

More than anything, I just want my daughter to be healthy again. I believe in the power of positive thinking. As long as she keeps fighting, I will never give up hope.

To any parent walking a similar path, I want you to know: You are not alone. Stay strong, keep believing, and never stop praying. Hope is always there, even in the darkest moments.

SARAWAK CHILDREN'S CANCER SOCIETY