Dayang Intan Batrisya was only ten years old when she was diagnosed with Ewing’s Sarcoma of the Left Zygoma in 2022. Her cancerous cells were detected in her bones or in the soft tissue around the bones located just below her left eye. Her mother, Maria Binti Anong Adini shares their story:
A growing lump
At the early stages of her symptoms, I noticed a small lump on Intan’s left cheek. It was not painful and she was not having a fever. However, in just two weeks, the lump grew bigger and I knew that we had to get it checked at a local hospital in Miri.
We visited the Miri Hospital where we were admitted for a few nights so that Intan could go through several tests. My heart sank as I thought it must be more serious if we had to stay over at the hospital. Shortly after the test results were out, I was told that Intan was diagnosed with cancer. For the first time in my life, I felt so helpless as a mother.
Receiving the news
Things escalated quickly after – Intan was scheduled for an operation to remove her tumour at the Sarawak General Hospital (SGH) in Kuching. There was no question that I would stay by her side in Kuching. Deep down, I also know that being there for Intan also means leaving my husband and my three other children behind in Miri. It was a news that was hard to swallow, but it gave me comfort knowing that my kids were capable of taking care of themselves.
When Intan’s siblings learned about her cancer diagnosis, they were shocked. We all were. But we knew that we had to stay strong together as a family to help Intan get through this.
Separation from family
The hardest part of this journey for both Intan and myself is being apart from our family in Miri as Intan goes through her treatment protocol in Kuching. Our family has always been tight-knit since day one and our children share almost everything with each other. So not having them around is challenging as they have to remain in Miri for work and studies commitment.
I remember watching Intan in pain one night. You could just tell that she was feeling so much discomfort, shivering from her fever and nausea, tired but unable to fall asleep. No matter how much I tried to comfort her, she had no clue why she was feeling the way she felt. Nights like those are tougher than usual, but I tell myself that I have to stay strong and patient for my daughter, and this, too, shall pass.
Our greatest strength
Before this, Intan had long luscious locks of thick hair. She decided to cut it short before going for her scheduled operation in Kuching. After recovering from the surgery, Intan started her chemotherapy treatment at the SGH’s Paediatric Oncology unit. A few sessions in, her hair started falling out.
As a sign of support and love towards their youngest sister, my three other children arranged for an appointment to shave their heads at a salon in Miri. When they first told me about their plan, I was amazed by their maturity and kindness to support Intan.
Awang Arif Hafizzudin, my eldest 22-year-old son, said “This is the least I can do to support my sister and to tell her to stay strong. She is not alone in this journey, and I want her to know that we are going to stand by her side the entire way.”
Intan’s 20-year-old sister, Dayang Alya Farizah pointed out, “Knowing that she is going through the physical and emotional toll of chemotherapy was heart-wrenching. Although I cannot share her pain, I can do something to make sure that Intan knows that her brothers and sister are always here for her no matter what – shaving our heads in solidarity. Our hair doesn’t matter, but our little sister does. I am not afraid to shave it all off because I am willing to sacrifice anything to help her overcome this obstacle in life.”
“Family is everything. As siblings, we have always been there for each other. Even though we cannot be there with her physically, I want her to know that we are fighting this battle with her. Going bald to support my sister is nothing when compared to the pain and suffering that she has to endure,” shared Awang Amirul Hakim, Intan’s 16-year-old brother.
Embracing baldness as a sign of hope
Intan was ecstatic when she saw pictures and videos of her bald siblings, who looked just like her. Their courageous act of going bald had cheered Intan and I am so proud of how they came together to support their youngest sister.
Intan was never upset or ashamed of her changing appearance due to her bald look. She felt an immense sense of gratefulness and hope through the emotional bond it (being bald) had created with her supportive siblings.
I am so proud and glad that Intan now sees being bald in a new light – a sign of hope, courage and halfway through the road to recovery.
Her siblings have made this journey a more positive experience for her. They will always be there for Intan no matter what and we know that we will walk this journey together as a family.
A family away from home
Although we have been away from home for almost a year, we have found a family in SCCS who continues to support us in every step along this journey. They provided us with accommodation at the Kuching halfway home and transportation to receive treatment in SGH. I am also grateful for SCCS support services team who constantly ensures Intan is comfortable and happy at the ward. Intan always looks forward to doing kids activities with the team, especially if it is arts and craft related.
One of the fondest memories for Intan was when she got to spend quality time with her siblings at a movie premiere sponsored by SCCS after not being able to see them for a few months. It was so heart-warming to see her big smiles and laughter when she met up with her brothers and sister.
When things get tough, the support services team will initiate counselling or caring sessions for parents and caregivers to get together and share their feelings and emotions. These sharing sessions have allowed me to share my challenges and hardships in a safe space, providing me with strength and resilience to keep going.
What also keeps us going in this fight is knowing that we can reunite with our family and hold each other again in Miri. Intan is currently halfway through her 16 weeks of radiotherapy at SGH and continues to fight this battle with courage.
Message to families fighting the battle against childhood cancer: You are a fighter! Keep your faith, laugh a lot, grow with each other, stay positive and brave. Remember that you are loved – have hope and never give up.
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