By Salma Choudhury, Founder & Chairperson, ASHIC Foundation
Translated by Maheen Hamid
Ashiq was the fruit of a late pregnancy, when my older two children were teenagers and my husband was extremely busy building his business. A lifetime homemaker, I could not be happier about our new bundle of joy. The rest of the family was ecstatic along with me when Afzal and I welcomed our son into this world on 17th February 1990 at London.
Given the risk of complications with my pregnancy, I stayed with my brother in London during the last trimester, under the care of some of the best doctors at St. Mary’s Hospital – an institution known for its history and traditions. Post-delivery, we were even kept in the same room where Princess Diana had Prince William. This often prompted my husband to say, “Princess Diana’s son made his 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. Happiness was contagious and it seemed that after many personal losses for us over the years, this happiness was here to stay. In February 1977, I had lost my elder daughter, Munia, due to a freak accident resulting in an irreversible brain injury. Within two months of her passing, I was blessed with my younger daughter Maheen. I was then very young when I lost Munia and due to family commitments and a new baby, I was forced to become reintegrated into our daily routines. The experience had left deep scars in me and a nagging fear remained with the fate of my remaining children. Of all my 4 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, he suddenly lost his healthy appetite for food. 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 treated for pneumonia. He continued to be fussy throughout the day but seemed to be better enough to be taken home the next day. After this episode, Ashiq’s health took a turn for the worse. He would frequently vomit after his meals and this worried us. In March 1991 we took Ashiq to England for a check-up but after ten days in the hospital, numerous tests failed to indicate anything extraordinary.
In September, now back in Bangladesh, Ashiq suddenly had an acute case of diarrhea. He was admitted into the hospital where he stayed for 5 days. Slightly recovered, we returned home to the same routine of his poor appetite and listless disposition. From then on, it seemed that he spent most of his time battling some ailment or another, with frequent high fevers.
I religiously took Ashiq to the doctor at any hint of fever or cold, but the doctor kept on prescribing long lists of medicine, trivializing his conditions as being mere viral attacks. He also often laughingly stated that I was an over-anxious mother. The doctor never ran any routine tests while he poisoned my son’s body with medicines that were not helping him. As the doctor was a fellow Rotarian, out of courtesy we never questioned his decisions. In retrospect, I would encourage all parents to question your medical staff, even if it means that you are losing face. You are the one who spends most of your day with your child and are able to pick up clues that a busy doctor seeing your child for a few minutes cannot. Be tenacious because you may help to uncover something that your regular doctor might have missed. I now wish I had done that.
Under the doctor’s neglect and our very eyes, Ashiq’s abdomen became unusually large and my once vibrant child became lethargic, weak and quickly exhausted from slight activities. I took him back to England, where I stayed with my elder brother, his wife and their two young children.
April 14th, 1992. We had an appointment with Ashiq’s General Practitioner (GP). He ran a battery of tests, including several chest X-rays. I became increasingly anxious, 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 detected in an X-ray. For further investigations, he had Ashiq admitted into the Farnborough Hospital by April 16th. 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) for Sick Children, where the staff was more equipped to give us better answers. 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. My husband Afzal was informed immediately and he dropped everything at a day’s notice to be by my side by April 20th morning.
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 fate 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. Later we came to know that Ashiq had Rhabdoid Renal Tumor, him being the 23rd 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 much more than before. 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. I kept on asking, why my Ashiq?
Since Ashiq had already lost a lot of weight, the doctors decided to insert a NG Tube (which is a feeding tube) through his nose into his stomach. The discomfort from this was only the beginning of my little son’s pain.
May 2nd, 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. And so it went for 3 more months giving his chemo after every 21 days.
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 in pain”. Amazingly, even on the last day of his life, when he was heavily drugged with morphine, he said the same words. 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. Jon Pritchard, Ashiq’s primary doctor, told us that Ashiq had responded well to the chemo. 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 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. This certainly eased all the poking but it also meant that Ashiq had a tube that protruded from his chest and which I had to flush weekly with heparin. 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 long hours because of time differences with Bangladesh, 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 Bachelors degree. On his way to New Jersey, he stayed with us for a few weeks. It gave Ashiq tremendous enjoyment to have his Bhaiya (big brother) to play with him. Seeing his joy, we decided that Ashiq needed his life to be as normal as possible and as such sought to bring Maheen to London as well. Ashiq’s joy knew no bounds; he loved having his Appi (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 11th, Professor Spitz and Mr. Duffy operated on Ashiq for five and a half hours. They removed his right kidney and 1/3rd of his liver.
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 chemo. He was given three more courses. However, this time, in between the chemo, Ashiq fell violently ill. His fever was so high that the usual medicines were ineffective. The doctors prescribed a strong dose of antibiotics for his fungal infection, 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 50% 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 brothers 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, and explained that due to a blood-barrier to the brain, often the chemo does not work above the neck, which could have resulted in the tumor. They felt we would have good success with radiotherapy. The three week long radiotherapy ended on March 3rd. 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. 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 who immediately arranged for a CT scan. On May 4th, 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.
May 6th, 1993. After consulting the scan report, Dr. Pritchard who did not want to face us told his junior doctor to inform us that there was no further treatment for my son, this time the cancer had spread throughout his stomach lining, possibly from some cancerous cells that remained from extraction during his surgery. 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 and lost.
My husband and I 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 force-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 but she could not. In less than two weeks after our last appointment with Dr. Pritchard, on May 18th, 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 tries to relieve them from their pain by setting up an IV with continuous flow of morphine). The team came to our home on the 19th and set up the IV. As the pain became more unbearable for our child, the dosage was increased from 20 drops to 45 drops 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 and not in pain?” 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 coming loss. That whole night, I held Ashiq close to my heart. Habitually, he put his little two feet between my legs. 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 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. In England, I learnt that in hospitals they not 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 hospitals, 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 and saw that there was much to be done in this little attended sector. Thus, the birth of ASHIC, which means (A shelter for helpless ill children) Foundation for Childhood Cancer, our non-profit charity organization dedicated to improving the quality of life for cancer affected children and their families.
It is an opportunity for me to keep our son Ashiq alive, while I make a difference in lives of thousands of other cancer children in Bangladesh. Even though most work does not appeal to me anymore, I love my work for 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.
2018, twenty five 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 son made his 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 now in, a palace which is far more glamorous, more beautiful and wonderful than any other in the world, even the Buckingham Palace.