Light at the end of the tunnel.

When we received the news, we were devastated. However, as parents with a positive attitude, we approached it as if we had been given a golden opportunity to cure our daughter, and we decided not to miss this chance. What other option was there but to become expert caregivers and advocates on behalf of our sweet child? We were determined to ensure we were making the best decisions for her and providing the best care possible.  

We prepared for Mahiyaa’s bone marrow biopsy and sought opinions from four other pediatric hematologists and oncologists from across the country, with the help of our family and friends in the medical field. After three days, the biopsy results confirmed that our princess was diagnosed with **B-cell pediatric acute lymphoblastic leukemia** and needed immediate medical attention.  

The doctor explained the chemotherapy treatment plan to us and urged us to remain patient as they identified possible risks associated with the diagnosis to improve the chances of remission. These results would be determined during the induction phase of her treatment.  

She was started on hypertensive hydration treatment via IV to reduce the risk of tumor lysis syndrome during chemotherapy. This condition occurs when large amounts of tumor cells are destroyed quickly, releasing harmful substances into the blood. Due to her extraordinarily high white blood cell count, the acute chemotherapy treatment carried risks of damaging her kidneys, liver, or causing potentially fatal complications. Mahiyaa required close monitoring before, during, and after her chemotherapy sessions.  

We had to stay in the hospital for another 10 days. During my stay with her, I gradually explained her diagnosis and the reason for our prolonged hospital stay. I told her she had some very bad bacteria in her blood that were making her severely ill and that she needed to be really strong to help the doctors fight the bacteria with medicine.  

Her innocent face quickly turned to fury as she became angry at the "bacteria" that were keeping her in the hospital. She kept saying she would fight them. She missed her younger brothers, Kayhan Bala (4) and Deehan Bala (2), as well as her virtual classroom friends.  

How could I explain to her that she was fighting a disease far more dangerous than bacteria or any virus?

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.   

The Dark Day

Our daughter, Mahiyaa Bala J, was usually a bubbly and vivacious child a diva to many and loved by everyone. At the end of May, over the weekend, I noticed she seemed tired and unusually uninterested in her favorite activities or the weekend itself. I assumed she might just be exhausted from her busy schedule of online classes during the MCO. However, within the next three days, she developed a fever. As parents, we felt something wasn’t right. Following our usual practice, we immediately brought her to the ER. At that time, we were primarily concerned about ensuring her fever wasn’t due to the Covid-19 virus. 

The medical officer (MO) on duty ordered a blood test for her. Shortly after the first blood test, a nurse came and informed us they needed to conduct another test as the previous results were unclear. This surprised us, but we complied, and another blood test was conducted. An hour later, the MO informed us that Mahiyaa needed to be admitted as her blood results were concerning. He referred us to a pediatric specialist and forwarded the blood reports to a hematologist. We were shocked to learn that her blood readings were unstable, with her white blood cell (WBC) count over 1040 million when the normal range is only between 5-11.

Due to the MCO, only one parent was allowed to stay with her, and I decided to stay. After completing a Covid-19 PCR test, we were admitted to the observation ward. Only God knows how many medical websites I browsed that night, trying to understand what might be causing her unusual WBC count. Most of the results pointed to Hepatitis B or leukemia. My maternal instinct told me something was seriously wrong, and I couldn’t shake the fear that this wasn’t just paranoia. The more I read, the sicker I felt. I don’t know how I made it through that night. 

The next morning, the hematologist came with devastating news—our princess most likely had leukemia. However, they needed a bone marrow biopsy to confirm the diagnosis.  

"Can you imagine what it’s like to hear those words come out of a doctor’s mouth?"  

As a mother, I tried to remain calm, but internally, I was shattered. I never imagined that a healthy, breastfed child—who had excellent prenatal care and never missed her vaccinations or routine check-ups—could suddenly have cancer at the age of 5 years and 7 months. It felt like my world had collapsed beneath my feet.  

While the doctor asked me questions about her symptoms and our family’s health history, I stayed composed in front of Mahiyaa. She had no prior symptoms like bruising, frequent fevers, or bleeding, aside from this fever, which was her first in over a year.  

Having spent more than eight hours surfing the internet, I was somewhat prepared for the diagnosis, even though it was incredibly difficult to accept. One small relief was learning that with proper treatment, the outlook for children and teens with leukemia is generally positive.  

I called my husband to share the diagnosis. I tried my hardest to hold back my tears and fears. Somehow, I managed to deliver the news. We were both silent. In that moment, we thought we could suppress our emotions, but only God knows the pain we felt in those few minutes without saying a word. I knew he was breaking on the other end of the line.