At first I didn’t give Jasni’s drooping right eyelid much thought. I did worry he would grow up one eye smaller; which mother would want her child grow up less than perfect? When he started complaining of headaches, I attributed it to the time we spent outdoors. Kuala Lumpur’s sweltering heat always gives me a headache.
It was when he started vomiting that I knew something was not right.
My husband and I brought our son to our family doctor, who scribbled a hasty note and advised us to take Jasni to the General Hospital. If it were up to me, I would have preferred a private hospital; the General Hospital was old, and I heard a lot of unpleasant stories about the place. But we were both clerks with limited medical coverage. Private care was out of the question.
I expected the old, peeling paint of the ugly cartoon murals. I expected the creaky plastic chairs. I expected the tired look on the nurses’ faces. What I never expected was the quality of care offered to my son. The doctor, though he looked about my younger brother’s age, spoke with us with a kind, gentle tone. He arranged for immediate admission and an urgent MRI. At first I didn’t know what it meant. But seeing the narrow tunnel in the middle of a large white machine, I consented for them to sedate Jasni. I would ask for sedation myself, if I ever had to go into that loud tunnel.
An older doctor came to us with large sheets of black plastic films a few hours after the MRI. She was a small, curly-haired lady with red-rimmed reading glasses framing her face.
“Hello.” She offered her hand for me to shake. “I’m Doctor Tan, the Pediatrician managing your son. Puan Salbiah, I’m afraid I have grave news.”
From the moment I saw her grim face as she approached us, I knew my fears were confirmed. “Jasni’s not well, is he?”
“No. He has brain cancer, and the tumor has spread to his spine.”
Never in my thirty-two years of life had I imagined I would call a hospital home. But home it became, when my son was diagnosed with atypical teratoid rhabdoid tumor, an aggressive childhood brain cancer. Finding out your four-year-old child has cancer is something a mother should never face. Jasni underwent surgery and a few sessions of chemotherapy, but even I could tell he was getting weaker with each session.
We tried to lead a normal life, as normal as a family could get, living in a hospital. My husband continued working, while I took unpaid leave. We had dinner at the cafeteria; I even made friends with the cashier. Jasni loved visiting the playroom, a dilapidated, sad room that had seen better days. He played with stuffed toys that had missing limbs. He played with building blocks, whatever was left of them. He would always look up and squeal at me with the energy of a normal four-year-old, energy I wished I had.
Almost two months in the oncology ward, Jasni asked me a question someone his age should never have to ask.
“Mama, am I dying?”
I pulled him from his bed onto mine, and cradled him close. I looked out the window, hoping he would not notice the tears forming on my eyes.
“Mama, I’m scared.”
“Me too, sayang. Me too.” I held him tight, dreading to let go of him.
Long after he fell asleep, I was still crying.
And I couldn’t let him go.