Before my five-year old son Khairul Syakirin passed away due to leukemia in October 1991, he repeatedly asked me to write down his story so that others would know what suffering the disease was like for a child. I promised him that I will write. At first I wrote his story in Malay and sent it to Utusan Malaysia but sadly it was not published. Then I rewrote it in English and sent it to The New Straits Times and it was published as a four part story, beginning on 9 June 1992.
This is the first part of Syakirin's story....
I was used to hearing my mother, whom I called Ma, being bombarded with questions about why I looked pale.
Being a boy of just over four, I did not pay much attention to the questions. Actually I was quite a fair-skinned boy - this could be the reason they mistook my fairness for being pale. I was feeling all right really.... wishe you all could see me rode my bike.
I was quite an active boy. In fact, my father ('Aboh' to me), often labelled me 'overactive' for I always running here and there, climbing whatever interested me and more often than not, causing Ma to lose her temper!
But sometimes all those questions did lower my self-confidence and like many adults, I felt scared too, at times.
"What's wrong with me? Am I sick or something? I guess not, for I feel as fit as a fiddle. Nothing can be really wrong with me." I began to have a dialogue with my inner self, especially when my self-confidence was too low for my comfort.
I was Khairul Syakirin, but my family preferred to call me simply as 'Adik'. Actually I was the youngest child in the family, at least for a while since no younger member of the family was anywhere in sight as yet!
My father was a Veterinarian whom I adored second only to my mother. From him I knew that I was born on July 23, 1986, which was two weeks earlier than expected, and a day later than Aboh's birthday.
I guess I was too eager and impatient to see, feel and enjoy the beautiful sunshine and fine Malaysian scenery.
True enough, even before I was barely two, many of the beaches, streams and parks in Terengganu had felt my presence.
Even as a toddler, I had shown an inclination to enjoy mother nature. I preferred the stillness of parks and the invitingly cool streams rather than the hustle and bustle of city life, crowded shopping complexess and, worst of all, I really despised visiting someone's house just to hera adults chatting over trivia.
For this, I was liked by Aboh, for he too disliked wasting time over nothing.
One day I woke up feeling dead tired. I had never felt that way before. I could not keep up with Aboh any longer, especially during our usual exploring of the farm's deer unit.
I had lost the stamina, the endless energy reserves that I used to have before. I was beginning to tire easily.
I could not remember exactly when I first felt the pain in the left side of my neck. It was so painful that I could barely turn my head without having to turn my entire body. There was something wrong with my collar bone. It was slightly swollen.
Thinking that I might have sprained my neck during my numerous previous falls, Aboh brought me to see an Indian medicine man in Jelapang who was said to be good in treating sprains and mending broken bones. I was really scared when I saw many grown-ups crying in pain when they were handled by the medicine man. When my turn came, I really screamed...it was so painful.
He told Aboh that I suffered quite a serious injury from one of my falls. I was not that convinced by his explanation, but true to his word, the pain did vanish from my neck area. But that was not all... there were more pains to come.
In the next few days the pain strangely shifted to the knees. The pain was so excruciating that I was barely able to stand, let alone walk. I had to be carried everywhere, even to the toilet - just like a baby.
I also began to have fever, not a very high one, but it lingered on for days despite Ma forcing Paraetamol syrup down my throat. My lymph nodes, especially the superficial ones around my jaw, seemed to grow in size.
I was getting paler as time went by. Only then I I realised that the neighbours were right after all. When I looked into the mirror, which I normally did after my bath, I felt sad as the boy staring back at me was very pale and weak, not the boy who used to be full of vigour and life.
My tummy was also beginning to swell. I felt so uneasy because the big tense abdomen made breathing so difficult and I felt so inferior and embarassed whenever someone stared at me.
My belly was so big that it outsized most of my pants and I could hardly zip any of them up. This troubled me a lot since I preferred my shirt properly tucked in. I really took the trouble always to look smart.
One night I overheard Aboh telling Ma that he was worried about my condition. I pitied him for I knew deep down his heart he would have wanted to bring me right away to the hospital.
As a sort of compromise, they decided to sed me to a faith-healer in Kuala Terengganu.
So one Saturday afternoon, off we went to Kuala Terengganu. We arrived late but that very night I was brought to see the faith healer.
Many were waiting, but on seeing my sorry condition, they all allowed me to cut the line. I resented being handled by strangers. I struggled and screamed my heart out the minute the faith healer touched my swollen belly.
It was quite impossible for him to properly examine me.
He told Aboh that I was suffering from a kind of liver disease. According to him, my liver was greatly enlarged and he had to perform a 'surgery' on me to correct it. We were told to come back in a week's time.
We did come back, but as expected, I was struggling and uncooperative so they cancelled the surgery. On the way back, I was brought to see a private clinic for a second opinion. The doctor examined me thoroughly despite my protests and told Aboh that I was suffering from a form of blood disorder.
The doctor asked Aboh to bring me to Ipoh General Hospital for proper diagnosis and treatment.
My condition was getting worse. I felt tired and weak. I could hardly breathe and open my eyes. I felt like dozing off every time I was awake.
So on the morning of 6 August 1990, I was sent to Ipoh Hospital. After just taking a casual look at my condition, the doctor told Aboh that I was probably suffering from leukemia. Aboh was scolded for not bringing me earlier. I was put in the ward K6.
Being the way I was, I made everybody's life difficult during the first few days in the ward. I cried most of the time. I would not allow doctors to examine me without a fight. I was referred to as a very uncooperative patient. I did not even allow the nurses to take my body temperature and blod pressure.
I knew I had embarrassed my parents for my behaviour. Sorry Ma sorry Aboh. I could not help myself - I was terrified of the ward's environment, the smell of medicines and the strange faces.
Mind you, I was just four...I had seen bigger boys behaving worse.
Every time I saw Aboh coming, I would always be busy packing my things, ready to go home. I really missed home.
In the ward, I was immediately given blood transfusion and antibiotic cover. To confirm my sickness, the doctors performed what they called 'bone marrow aspiration' on me. What a very very painful procedure it turned out to be.
Imagine, I had to bear the frequent poking of long needles into my buttocks. Though I was put on Ketamine, I was aware of all that they were 'practising' on me.
The pain was so great that I lost control of my myself and passed motion on the bed. Thank goodness I was made to wear diapers! I saw tears streaming down Aboh's cheeks when he saw the horrible-looking blue bruises on my backside.
It was finally confirmed that I was suffering from leukemia - Acute Lymphobalstic Leukemia, to be more exact, or just ALL in short. It was Aboh who told me all these fancy- sounding terms.
The doctors told Aboh I had to be sent to Kuala Lumpur General Hospital for furher treatment. The moment Aboh heard the news, I saw a worried look on his face, for he knew what kind of problems he had to face soon.
After overcoming the shock, Aboh contacted my grandparents back home telling them the sad news....
To be continued