Thursday, March 6, 2008


I am losing my fight against leukaemia....

"Please write and publish my story so that others will understand what suffering from childhood leukaemia is all about..."

Whenever I felt strong enough I spent most of my time doing whatever I felt like doing. However, Aboh would always make sure that I did not over-exert myself. I was also very close to my brother Khairul Syazwan who resembled me both in looks and personality.

Some time in July 1991 I overheard Dr Raja Khuzaiah telling Aboh that at the moment I was all right physically, but that tissue matching should be done on my siblings to determine my bone-marrow donor should the situation require a bone marrow transplant.

So some times in August that year we went to KLGH for the test. It was pitiful to hear Syazwan screaming away while his blood sample was being taken.

As for my sister and elder brother, it was a quick one, but they were really angry at the doctor.

For me there was nothing much to it. The test showed that only my sister could be my donor.

Suddenly in late August 1991, I began to have bad headaches, especially at night. Altough I did not tell Aboh and Ma about the pains, they were quick to know as I was restless at night and I was also feverish most of the times.

During my monthly check-up in September 1991, Aboh revealed my problem to Dr Rahman and Dr Raja Khuzaiah.

She did a thorough physical examination on me including my eyes. She decided on a spinal tap to see why I was having those headaches.

Thinking that the test would not show anything, we all went home after that. I was glad that I was not hospitalised.

At about 3.30 pm the next day the phone rang and Ma quickly picked it up. Then she began to cry...

"What's wrong?" I asked myself. Still crying, Ma contacted Aboh in his office with the disturbing news - a lot of cells had been found in my cerebrospinal fluid.

Aboh came back immediately and dialled Dr Rahman. Aboh was asked to bring me as soon as possible to KLGH for I was likely to have a central nervous system relapse.

We left for KL very early in the morning. I cried before and all along the way. I did not know why, but I just did not feel like going to the hospital this time. Neighbours in the farm all came to see what was wrong with me.

I was admitted for the first time into the Institute of Pediatrics ward KK 7. I saw familiar faces there and that prevented me from becoming too depressed.

Once again my cerebrospinal fluid was taken for a test. It was finaly confirmed - I was undergoing a central nervous system relapse.

Dr Raja Khuzaiah began discussing my condition with Aboh. She gave her solemn word that she would do her best to expedite my bone-marrow transplant. She said she would explore all the possible ways to get the transplant done on me.

I was sent for a CAT scan to ascertain what was wrong with my brain. What an experience it was! They could not see anything wrong with my brain but I was getting weaker all the time.

My legs were painful to the touch and I could not move them without screaming in pain. Aboh had to carry me everywhere.

Dr Rahman ordered my legs to be x-rayed. On the way to the X-ray room I had a long chat with Aboh. I told him not to forget to write down my story so that others would know the plight of of children suffering from leukaemia.

The x-ray showed no abnormality in my legs, but the pain persisted and it was getting unbearable.

I was realy humiliated when one doctor accused me of being over-pampered because I had screamed and cried when he examined my legs.

Aboh was furious and gave the doctor a piece of his mind by telling him that I was not that sort of a boy, there must be something wrong with me or I would not have behaved that way.

My condition deteriorated. Dr Raja Khuzaiah ordered me to have intrathecal injections of methotrexate on alternate days. The regime was too painful for me to bear, but what choice did I have? Blue bruises were clearly seen all along the lumbar region of my backside.

I was feeling very weak by now and the energy seemed to have drained away from my frail body.

There were pains everywhere in my muscles, my joints and my head. I had lost my appetite altogether. Food and water did not seem important to me anymore. The presence of Aboh and ma did not comfort me like before. I did not know why, I just felt like asking them to leave me alone.

As I lay quite motionless on the bed, I realised that my days in this beautiful world were coming to the end.

I did not know what death was, but my young eyes had witnessed many of my friends passing away in the ward. Mine would be a short life...but I thought it would be better this way - less burden physically and mentally on both my family and myself.

Before leaving this temporary world for a more permanent one, and before I went to see Allah, the most merciful and compassionate, I gave Aboh the mandate to continue my story the best he could so that I did not leave this world with something uncompleted.

Even when he was still physically strong, he had repeatedly asked me to write something about his life - the life of a boy so young having to face such a daunting and uncertain disease as leukaemia, so that others would know what it was like - the pain, the fever, the blood transfusions, the painful procedures, the endless hospitalization and worst of all, the fear and physical trauma the disease inflicts on all involved.

Adik's condition was pitiful; he was emaciated, lying prone in the bed with the expression I had not seen before. It was somewhat like being in a trance or being sedated. He was clearly in great pain.

What worried me most was that he did not eat or drink anything. He did not even show any feeling at my presence - it was not like before, when he would always be jovial every time I paid him a visit. Now he would not even speak to me.

He continued in that semi-conscious state. He was always mumbling something I could not make out. His condition worsened. He suddenly passed out reddish urine - haematuria.

He was immediately treated to stop the bleeding. Several times he asked me to take him to the toilet but there was nothing. He urinated pure blood a few times that day. His internal bleeding had not been arrested!

In his half-awake state, he began asking both of us to be close to him, to hold him and lie down besides him on the bed. I could not control myself. I cried openly as I held him, cuddled him and kissed his cheeks. He was so light...

"Adik rindu pada Syazwan..." he released his feelings in a sad slow voice.

Then it finally dawn on me that I was losing him, Adik was losing his battle with leukaemia. I began to read Yaasin verses while fondling his fine hair. Then he fell asleep. With a heavy heart I left him for Selayang.

While I was just getting into the slumber world, I was rudely awakened by Razak knocking on the door. Razak told me that the hospital called. Adik was in critical condition. He rushed me to the hospital.

As I made my way into ward KK7, the ward was busy with doctors and nurses running here and there. I saw doctors surrounding Adik's bed.

My wife was sobbing in a chair in one corner of the room. One of the doctors called me and said that Adik's blood pressure was alarmingly low, most probably due to serious internal bleeding.

Adik was put on dopamine and oxygen. I saw Adik struggling uncomfortably when he was stripped naked.

When Adik's blood pressure was once again detectable, the doctors left the room. My wife was still sobbing. Adik was lying on the bed with eyes half-closed. His lips were dry and my wife constantly wetted them with water.

"Ma, air..." Adik begged.

My wife gave him a cup of water and brought it to his lips.

"Tak nak air tu...Adik nak air lain..."

We were flabbergasted, how on earth did he know that the water had been used to wet his lips? My wife quickly gave him a fresh cup of water. He drank it slowly.

"Aboh, sakit.." Adik exclaimed in a low shivering voice pointing to his belly.

Adik's breathing was becoming more and more difficult. I read him a few verses from the Quran and whispered them into his ears.

Realizing that his breathing was becoming abnormally difficult, my wife rushed to call the doctor on duty.

To my surprise the doctor, who was not familiar with Adik, told us there was nothing wrong with Adik's breathing. I was annoyed with his explanation. Being a Veterinarian, I knew what a dyspnoea looked like.

Adik's breathing was getting shallower and his lips were turning blue. I read him a few more verses from the Quran. My wife was crying in the arms of a friend.

She could not bear to witness it all. I was all alone by the side of my boy when, peacefully he breathed his last breath. I had lost our beloved son, our intelligent, good-natured and mature boy.

Adik passed away at 2.15 am 7 October 1991, after suffering from leukaemia for one year, two months and one day.

His departure was a great loss to us, but he had taught us a great deal about being rave, patient and positive. We grew stronger as a family. We submitted to the will of Allah. May Allah bless his soul and place him amongst His beloved.

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