In April 2020, 7-month old baby Carlissa Rafaeilla was diagnosed with Langerhans Cell Histiocytosis (LCH) during the outbreak of COVID-19 in Sarawak. LCH happens when a person’s body produces too many immature immune cells, forming tumours as these cells build up. Carlissa’s family was devastated when they received the news. Her mother, Mary Lin shares their story:
Early signs
When Carlissa was born in September 2019, my husband and I were overjoyed that we could finally hold her in our arms. It was an emotional rollercoaster of feeling so much love for Carlissa, yet anxious at the same time caring for this new life. However, we both felt a strong instinct to protect and care for our third child.
A few months after Carlissa was born, I noticed that she was looking very pale. Her usually rosy cheeks and vibrant complexion seemed muted and displayed a faint, almost translucent colour. I was very concerned and suggested to my husband that we bring her for a check-up.
The diagnosis
We went to the clinic nearest to our home in Kota Samarahan. After the consultation, the doctor referred us to the Sarawak General Hospital (SGH) for further check-ups. It was a daunting experience not knowing what kind of condition our 7-month old baby was in and having to bring her to the hospital during the beginning of the COVID-19 pandemic. We were worried that it was something more serious than what it seemed.
After several tests and scans, the specialist at SGH sat us down and told us that Carlissa was diagnosed with Langerhans Cell Histiocytosis (LCH), a cancer-like condition. I remember my heart dropping when I heard about the news. It was a surreal moment and I was very worried for my baby.
The doctor walked us through the proposed treatment protocol, reassuring us that Carlissa’s condition can be treated.
Our daily battles
Whenever Carlissa had to be admitted to the Paediatric Ward 2A for her treatment, I would stay by her side to ensure all her needs are cared for. Throughout her chemotherapy treatment, she was frequently admitted to the ward due to her fever. Feeding time was a struggle because she was just introduced to solid food at the time but she had no appetite to eat. I had to encourage her to eat so that her body could receive the necessary nutrients. That was a stressful and frustrating time for me.
The COVID-19 pandemic also made this cancer-fighting journey more challenging for us. We had to practise extra precautions and safety measures to ensure that my baby was not infected. No visitors, including my husband, our two sons and relatives, were allowed to visit us at the ward to keep the patients safe. I had to do everything by myself, with the help and support from all the brave nurses.
Carlissa during her treatment period.
Tougher than cancer
During hard times like these, the team at SCCS was there to support me and all the other parents at the Paediatric Ward 2A. We received an individual care pack including toiletries, thermometer and thermal flask to help us adapt to life at the ward. During the pandemic lockdown, they made sure to deliver essentials like diapers, milk powder and food packs, ensuring that we would not run out of supplies. They also delivered some arts and crafts activities as well as board games to keep the older kids engaged. Their support has helped to reduce our financial burden.
Although the journey was very challenging at the time, I prayed for strength and resilience to get through this tough period safely with Carlissa. I could see that my baby is a fighter and she fought hard every day to stay by our side. It was also very encouraging to see that Carlissa was responding positively to the chemotherapy treatment. This gave me hope and courage to keep fighting with her.
Carlissa’s active treatment went on for about one year. She completed her intensive treatment in June 2021. This year (2023), Carlissa turns 4 years old in September. She continues with her follow-up visits to monitor her condition. Carlissa no longer needs to take any medication and she is progressing well so far.
Carlissa at one of the clinic days in Kuching in 2022.
Stay strong
Fighting cancer will never get easier. You will, however, grow stronger to overcome all the obstacles and challenges that come your way. So it is important to stay strong and keep a positive mindset. I know that it is easier said than done, but have faith that after the rain, the rainbow will come. Learn how to control your emotions and slowly work towards building a positive life no matter the circumstances. That is my message to parents who are going through a similar journey.
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