Story of Ashiq

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A Mother’s Anguish

By Salma Choudhury

Edited by Maheen Hamid

Some years ago, I had given up my teaching job so that I could take care of my growing children. But when my son, Asif, was 16 and daughter, Maheen, was 12, life was an expanse of boredom for me. Both the children were busy with their friends and school, while my husband was also extremely busy with his business.

Due to some previous health problems, my gynecologist in London had suggested that we try for a baby and so at a time when it seemed that I only had loneliness to fill my days, I was ecstatic to hear that I was pregnant again after so many years. My entire family was excited and very supportive throughout the pregnancy.

Time passed in a blink of an eye. Since it was a late pregnancy, and my husband, Afzal, wanted to ensure an uncomplicated delivery, he sent me to London, where I stayed with my elder brother during the last tri-mester. Afzal joined me a few weeks later and was there to welcome our son into this world on 17^th February 1990.

Our baby was born at St. Mary’s Hospital, under the supervision of some of the best doctors in the country. The history and the traditions of the hospital were awe-inspiring on its own but more fascinating was the fact that post-operation, we were kept in the same room where Princess Diana had had her two princes’. The wondrous co-incidence often prompted my husband to say, “Princess Diana’s two sons made their place at Buckingham Palace from here; what would fate have in store for my son in Bangladesh?”

We named our son “Ashiq”, which means ‘lover’. The name was perfect for him because when we came back to Bangladesh after a few weeks, Ashiq captured everybody’s heart.

Life took on a rosy hue for all of us as we centered our lives around this precious bundle. The day would start with his happy gurgles and it would end on his blissful but sleepy sigh. The entire family would circle around us as I gave Ashiq his morning bath and he seemed to thrive on all the attention. Happiness was contagious and it seemed that after many personal losses for us over the years, this happiness was here to stay.

In 1977, I had lost my daughter, Munia, due to a freak accident. I was very young when it happened but it had left deep scars. Of all my children, Ashiq resembled Munia the most and some uncanny feelings of dread would often come over me when I thought of Ashiq’s health. Not to let paranoia overwhelm me, I regularly took Ashiq to the doctor for routine check-ups. He was growing up a normal and happy child. When he was about 9 months old though, he suddenly lost his healthy appetite for food. More often than not, I had to force him to eat but apart from this abrupt distaste for food, he continued to be an utter joy for me.

His funny little tactics were a constant source of fascination to me. I still remember the times when he used to be happily playing one minute and the next minute he would be asleep with a sweet, wintry smile on his lips! Or there were those times when he would quickly pick up words my husband and I used to admonish our older children, and he would even manage to use them in the right contexts! All in all, to me he was a living doll who gave me tremendous pleasure in everything that he did. From his side, probably because I gave him so much of my time and attention, he was unusually attached to me. It seemed as if my touch seemed to take away all his miseries when he would be fussing. At these times, I prayed that I would always have the opportunity to heal his pain wherever he would go in his life.

One morning, Ashiq just would not stop crying, which was very unusual for him. I took him to the doctor, who, without running any tests, admitted Ashiq into the clinic where he was to be treated for pneumonia. He was prescribed four antibiotic injections a day. He continued to be fussy throughout the day but seemed to be faring better the next day. We waited until the drugs were being administered orally before we finally brought him home.

After this episode, Ashiq’s health took a turn for the worse: he would frequently vomit after his meals and this worried us. We had decided beforehand that when he turned one, we would take him to London for a follow-up check-up on a mild condition of hydrocele (a common problem in newborn males, it is a collection of watery fluid around the testicle). Having observed his ill health for the past few months, we decided on a full check-up.

We left for England in March 1991. After ten days in the hospital, numerous tests failed to indicate anything out of the ordinary. At last, the only suggestion the doctor made was for me to stop breast-feeding. Feeling reassured, we took a short vacation in Europe before returning to Bangladesh in May.

In September, Ashiq was suddenly affected by an acute case of diarrhea. He was admitted into the hospital, yet again, where he stayed for 5 days. The doctor advised me to feed him in small amounts at short intervals. He ate quite well for 2-4 days until his body system was back to normal again. After that, he fell back to his regular routine – he detested food and would vomit frequently.

In October, Ashiq came down with very high fever. I rushed him to his pediatrician and, without running any tests, the doctor prescribed some antibiotics. Ashiq went into remission but the fever was back about three weeks later. From then on, it seemed that he spent most of his time battling some ailment or another. It didn’t matter how much I tried to soothe him, I was unable to make him comfortable.

I religiously took Ashiq to the doctor anytime he had a hint of fever or a cold, but the doctor kept on prescribing long lists of medicine, trivializing his conditions as being mere viral attacks. He also said on several occasion that I was an over-anxious mother but I could not scream at him and tell him that I had already lost a child, I did not want to lose another. The doctor never ran any routine tests while he toxicized my son’s body with chemicals that were not helping him. As the doctor was a fellow Rotarian, out of courtesy we never questioned his decisions. In the meantime, I noticed that Ashiq’s abdomen was becoming unusually large. I thought this was extraordinary enough to warrant the doctor’s proper attention but he did a quick check and told us that all was fine. So, in front of our eyes, unknown to us, my Ashiq became weaker and weaker by the hour.

I got agitated by his state and was frustrated by the nonchalance of the doctors in Bangladesh. I wanted to take him back to London and could finally arrange to leave in the second week of April. My elder brother lived there, with his wife and two young children. As such, even though I was traveling alone, I was not lonely.

On April 14^th, we had an appointment with Ashiq’s General Practitioner (GP). She did all sorts of blood tests and had his chest X-rayed quite a few times. Premonitions of graveness made my heart cringe, but I clung to Ashiq as I prayed fervently for a clean report. At the end of the day the GP suspected tuberculosis from a patch in Ashiq’s X-ray report. For further investigations, she had Ashiq admitted into the Farnborough Hospital by April 16^th. The very next day, in the result of an ultrasound, they found a lump in his kidney. They suspected cancer but only told us to take Ashiq to the Great Ormond Street Hospital (GOSH), where the staff was more equipped to give us better answers for what Ashiq might be afflicted with. From the flow of events, I knew in my heart that something terrible had happened to Ashiq. I could not stop worrying or crying, knowing that I could not manage this situation all on my own. I was staying with my brother and his family but I felt completely alone. Afzal was informed immediately and he dropped everything at a day’s notice to be by my side by April 20^th.

Ashiq was admitted into GOSH the same day. Seeing all the cancer patients in the ward made me very nervous and I actually prayed for Ashiq to have tuberculosis; at least it would be treatable. Leaving our fates up to the Almighty, we barely bore the long and anxious days of the numerous tests. Against our deepest prayers, we were told that Ashiq had a tumor, not tuberculosis, and would need to have a biopsy. The operation was performed within 48 hours and reports concluded that our baby had a very rare type of cancer (PNET - Primary Neuro Ectodermal Tumor). They sent the biopsy in for Electronic Microscopic test for further findings. We came to know that Ashiq had ‘Rhabdoid Renal Tumor’; him being the 23^rd documented case in the world. The tests also showed that the cancer had spread to his kidney, liver and parts of his lungs.

We had plunged into the worst nightmare of our lives. We were young and inexperienced when Munia was taken from us but now we appreciated and valued parenthood that much more. We felt that our hearts had been wrenched out as, once again, we had to sit and watch the doctors try miracles while we sat in the sidelines, unable to do anything.

Since Ashiq had already lost a lot of weight, the doctors decided to insert a feeding tube through his nose into his stomach. The discomfort from this was only the beginning of my little son’s pain.

Dr. Pritchard, a consultant pediatric oncologist, was assigned to Ashiq. Once all the tests had conclusive results, Dr. Pritchard informed us of all the cancer treatment protocols available. I knew it would be better to accept the inevitable and be strong for the path we would have to choose, but I could only half-listen to the doctor, tears and grief clogging my senses. I kept on asking, ‘why my Ashiq?’

May 2^nd, 1992. Ashiq was given his first shot of chemotherapy. It continued for 72 hours, after which we went home. Within the week, Ashiq’s little body was wracked with ensuing infections – he had high fever and his platelet levels began to fall. Follow-up for these conditions were done at Farnborough Hospital. He had barely recovered when we had to go back to GOSH for his second chemo.

Watching him writhing in pain used to make me cry. I prayed for his pain to be mine but whenever he would sense my distress, he would put his little arms around me and tell me, “Ammu, please do not cry. I’m not hurting.” Amazingly, even on the last day of his life, when he was heavily drugged with morphine, he said the same thing; my little boy could not bear to see tears in my eyes. To this day, I do not know how someone so young was capable of so much empathy.

We would know after his second chemo, whether his treatment would be continued. Our hearts were filled with hope, anxiety, expectations. We let out a huge sigh of relief when Dr. Pritchard told us that Ashiq had responded well to the chemo and that we will continue with the treatment. We thanked Allah for His mercy and the entire family felt hopeful. Having read up on statistics by this time, I knew that many children survived cancer. In my heart, I felt that, may be, Ashiq will be fine. The belief was so strong that I convinced myself that this experience was Allah’s way of testing our faith in Him. Surely, we would go back to Bangladesh with a healthy baby at the end. Little did I acknowledge the possibility that there might be something else in store for us.

The chemo was a very painful process for Ashiq. Apart from the terrible after effects, it was becoming increasingly difficult to find the proper veins to insert the needle. His wails of despair and inability to express all his pain, tore at our hearts. To reduce his obvious distress, the doctors decided to operate and insert a ‘Hickman Catheter’, which is a hollow silicone (soft, rubber-like material) tube inserted and secured into a large vein in the chest for long-term use to administer drugs or nutrients. This certainly eased all the poking but it also meant that Ashiq had a tube that protruded from his chest and which had to be sanitized often. He also had to wear a special vest at all times to keep the tube in place.

Ashiq slowly got accustomed to all the changes in his life and seemed to take things in stride. He started to enjoy his days in his own way. He spent a lot of time in the hospital playroom, he loved watching cartoons, painting, looking at picture-books and listening to stories. He loved the regular visits from my brother, sister-in-law and their children.

We also changed our schedules to accommodate his needs. By this time, we had moved out of my brother’s home and rented a house down the street. We were hoping to be here for the long-term and tried hard to build a new life. My husband was working furious hours to be able to support our needs and I was spending all my time being with Ashiq through all his treatment procedures. By this time, my elder son Asif had left for the United States to pursue his Bachelor’s degree. On his way to New Jersey, he stayed with us for a few weeks. It gave Ashiq tremendous enjoyment to have Bhaiya to play with. Seeing his joy, we decided that Ashiq needed as much normalcy in his life as possible and as such sought to bring Maheen to London as well. Ashiq’s joy knew no bounds – he loved having his big sister around.

Ashiq’s cycle of chemo course was every 21 days. After 4 of such courses, the doctors decided to perform his first major surgery. The plan was to get most of the cancer out and then follow-up on the surgery with more chemotherapy to completely eradicate the cancer.

On September 11^th, Professor Spitz and Mr. Duffy operated on Ashiq for five and a half hours. They removed his right kidney and 1/3^rd of his liver. As we paced the waiting room, we prayed that the doctors were successful in getting us closer to a healthy Ashiq.

The surgery seemed to go well and it took about a week for Ashiq to recover from the initial impact. He was up and running by day 8, and we could not be happier. Another week later, we went back to GOSH for his second bout of chemotherapy. He was given three more courses. However, this time, in between these chemos, Ashiq fell violently ill. His fever was so high that the usual medicines were ineffective. The doctors prescribed a strong dose of antibiotics, which brought down the fever but it also made the electrolytes in his body imbalanced. For this reason, in December, the doctors said that the chemo would have to stop. By this time, the doctors also claimed that there was a 99% chance of Ashiq’s survival and it looked as if the cancer had been conquered. We would have to go back for follow-up check-ups every month and if Ashiq could be in remission for 5 years, then there could be some hope that he will live a full and healthy life. We were ecstatic with the news and decided to make our lives in England to accommodate Ashiq’s health needs.

We had a blissful month of complete happiness. Our parents came from Bangladesh, Asif came from the United States and we had a full house to celebrate our victory. Ashiq was in his prime, playing with his cousins (my brother’s children Anika, 8, and Sakeeb, 6, were Ashiq’s favorite playmates), and basking in all the attention he was receiving from all his family members. I felt as if I finally had a glimpse of my old life back and I thanked Allah profusely.

At the end of January, Ashiq started complaining of headaches. As he rarely complained of pain, we were worried. We took him to the doctors immediately and a subsequent CT scan showed that he had a brain tumor.

Our hearts plummeted at the news. Our baby was supposed to be cancer-free and barely a month had gone by before we were dealt with this lethal blow. The doctors reassured us though, and explained that due to a blood-brain barrier, often the chemo does not work above the neck, which could have resulted in the tumor. Ashiq would require radiotherapy and there was a good chance that he will respond to this treatment as well as he had responded earlier.

The three week long radiotherapy ended on March 3^rd. He had to go on steroids during this time, and as a result his body went through more changes. His eating pattern was different, his face was plumper and he looked a lot more bloated than before. But, once again, our valiant son kept up with the rigorous pace the doctors and we were placing on him.

We went back for a routine check-up in early April, and everything indicated that Ashiq was doing well, by the grace of Allah. We felt a sense of slight relief and dared to hope for the future again.

Shortly after this check-up, I was playing with Ashiq one morning when he pointed to a pea-like growth on his abdomen, close to his scar from the surgery. Not wanting to take any chances, we informed Dr. Pritchard immediately who arranged for a CT scan. On May 4^th, when we went to the hospital for the scan, Ashiq painted his last picture. How little we knew that all was coming to an end.

On May 6^th, after consulting the scan report, Dr. Pritchard informed us that there was no further treatment for my son; the cancer had spread throughout his stomach lining. The hypothesis was that during Ashiq’s surgery, some cancerous cells had remained in the stomach lining during extraction. As there were no chemotherapy that could address this new development, the doctors at GOSH were unable to do anything more. They told us that in their opinion, Ashiq only had a few more months with us. After a long year of our deepest anguish, pent-up hopes and dreams, we returned home feeling defeated, lost and not knowing what to do.

My husband and I could not shake off the feeling that Allah was still testing us and surely there were some other means for us to try to treat Ashiq. We could not give up hope because that is the only thing that kept us going during this difficult time. We tried Chinese herbal and homeopathy treatment but we could see that he was slowly wilting away. Our hearts refused to accept this. It was as if denial alone could keep him alive a little longer. We forced-fed him and willed him to live, to stay among us and continue to give us the happiness and love that he had so unselfishly bestowed upon us during the full expanse of his short life.

Ashiq’s health deteriorated at an extraordinary pace. Asif and my younger brother rushed to our side from the United States. My mother also arrived. Afzal’s mother was preparing to leave Bangladesh within the week. Less than two weeks after our last appointment with Dr. Pritchard, on May 18^th, Ashiq started writhing in pain. We increased the dosage of morphine that we had been told to give him. Seeing his restless state, we called the Symptom Care Team at GOSH (the team goes to the homes of terminally ill patients and try to relieve them from their pain by setting up an IV with continuous flow of morphine). The team came to our home on the 19^th and set up the IV. As the pain became more unbearable for our child, the dosage was increased from 20 mg to 45 mg per hour. He became delirious but even in this state, when he heard me cry, he said, “Ammu, please do not cry. Can’t you see that I am alright?”. What I could see was that my baby was slowly leaving my arms and the only thing I could feel was the blinding pain from this impending loss.

That whole night, I held Ashiq close to my heart. Habitually, he put his little two feet between mine. At the bottom of my heart, I knew that his time was near. From early dawn of May 20th, Ashiq started having breathing problems. He was also vomiting from time to time. Coke was the only thing that he was wanting now and then and that’s what I was feeding him with a spoon. The whole family surrounded the bed, each praying in their own way, but I was completely oblivious. It seemed that the whole world existed of only my son and me. Every time he heaved or vomited, I held him to my heart and got up with him. One of these times, when I was laying him down again, he put his arms around my neck and pulled me towards his chest. It felt as if he never wanted let go of me. Almost at once he started vomiting again. When again I went to lay him down, his small arms fell away. I started to pull him back to my heart but I saw that his eyes slowly became still. My son was only three years, three months and three days old.

I knew, looking at those lifeless eyes, that everything that I had hoped for, lived for had just left me forever. Everybody around me cried out in anguish, my husband picked up Ashiq and held him to his heart, but I had already slipped into a world of my own. My pain was unbearable and I knew that with my child had died the better part of me. I forgot what happiness meant and I lost my will to go on anymore.

I cannot explain the bond that I had with my son – he was a lifeline and the hope for my tomorrow. After his death, I could not bear the hardiness Allah had instilled in my family and me. The more I wanted to fade into the oblivion, the more I realized that no matter what I wanted, I had to live through another day. I had to be there for my other children and my husband. A new day will continue to come and leave me breathless with the effort to live through it. This is when I realized that if I wanted to have a meaningful existence, I had to do something to help other children like Ashiq.

Almost half of his life, Ashiq and I spent in hospitals around the world. In England, I learnt that in hospitals they don’t only treat the patients but also provide tremendous support to the parents, siblings and other relatives. The children are kept in their preferred surroundings and the doctor and nurses try their hardest to provide such an environment even within the stark hospital walls. In almost all children’s hospital, they have a play center where the children have the opportunity to just be children while under treatment. Hand in hand, the parents are given special counseling on the available treatments and on the changes they have to deal with. From my own experience I knew that all these measures had helped us incredibly to accept Ashiq’s situation and to deal with the drastic transformation in our lives.

Upon our return to Bangladesh, my husband and I, for the first time in our lives, started exploring the medical arena for childhood cancer. We found that the system was the exact opposite to what we had experienced in England. The affected children barely have the minimum level of care, let alone the peripheral services that we felt were so important. Doctors often start treatments without comprehensive diagnosis, altering protocols on an ad hoc basis. Communication between doctors and parents are non-existent; most parents do not have the knowledge of what their children are suffering from, what treatment they are getting or even if their child is going to survive the ordeal.

With this backdrop, I knew that with the lessons from my experience, I could offer tremendous benefits to the cancer-affected children and their families. Thus, the birth of ASHIC Foundation, our non-profit organization dedicated to serving cancer affected in Bangladesh. It is an opportunity for me to keep Ashiq alive, while I make a difference in lives of thousands of other Ashiqs. Even though most work does not appeal to me anymore, I love my work fro ASHIC. It never tires me to fill the world of affected children like Ashiq, with love and happiness. I am thankful to Allah and to all of you who have helped in keeping the memory of my son alive through the ASHIC programs. I pray that I can continue on this path for the rest of my life and hope that you will continue your support for us.

More than ten years after losing Ashiq, the pain has dulled but it still remains a heavy burden. Now, very often, I think of something my husband was fond of saying, “Princess Diana’s two sons made their place at the Buckingham Palace from here, what would fate have in store for my son in Bangladesh?”. I think of the palace Ashiq is in; a palace which is far more glamorous, more beautiful and wonderful than any other in the world; even the Buckingham Palace.

Hs. # 52; Rd. # 3/A; Dhanmondi R/A; Dhaka - 1209; Bangladesh

+88 02 861 3594