Saturday, May 29, 2021

Fear Of Unknown.


No parent is ever prepared for what happens when they arrive at the hospital. Seeing Mahiyaa so unwell and having no control over the situation completely threw us off balance. The first thing I realized was that we were not alone. There were many other parents and caregivers on the ward going through the exact same thing, and the staff at SJMC Hospital were amazing in supporting us during this challenging time.  

Our friends and family kept her happy with gifts and phone calls. We made sure she didn’t feel vulnerable or afraid during her treatment. We made lots of TikTok videos and played games to keep her spirits high. After spending 10 days in the SJMC pediatric ward, I tried to keep my mind focused on staying positive. There were no clear timelines or guarantees about how things would progress.  

Some mornings were difficult, followed by better afternoons. On days when Mahiyaa was very sick, we held onto those small moments of hope, telling ourselves we would get through this. Most of my time was spent surfing the internet while Mahiyaa rested. Rather than grieving and crying, I began learning as much as I could about her diagnosis. Knowledge was my way forward.  

When Mahiyaa was discharged, I knew I would need this knowledge to care for her, help her cope with the side effects of the treatment, and advocate for her needs. I needed to understand her condition well enough to explain it to anyone involved in her healthcare. Learning about her diagnosis also helped me appreciate how far she had already come on her journey, especially as I became her voice. I strongly believe that what we don’t know can truly hurt us. The fear of the unknown often stems from a lack of information, so I spent a lot of time researching online and speaking with people from medical backgrounds to gather as much information as possible.  

I learned that, in Malaysia, the percentage of pediatric cancer cases is very small compared to adult-onset cancers. This lack of prevalence leads to lower awareness among parents. Education and information are crucial—they can help parents recognize early symptoms and bring their children to the right medical professionals for diagnosis and treatment.  

Understanding that childhood cancers are highly treatable brought me a sense of calm. I also want to highlight that many parents’ fears about chemotherapy are often carried over from what they have seen in adults. However, I’ve found that children generally tolerate chemotherapy much better than adults. Instead of considering alternative therapies, I recognized the importance of medical advances and evidence-based treatments to provide immediate help and keep Mahiyaa’s cancer under control.   


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