The Real Fight for Life.

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tanveer1

 

“For death is no more than turning us over from time to eternity.”


I am Tanveer's sister. I could never forget what we went through in our family. My mother had once said “when ever someone dies he goes to God in the sky ". I am a Pilot today and when I fly and the open sky is in front of me, I never forget these words... But I know I will never find him. “My kid brother Tanveer”.

I was asked to write this small book for this site as "Tanveer Sidhu Charitable Trust (TSCT) is associated with this site. At the bottom of this page you will find other links relative to "Tanveer" please read it too. In case you need to send me some feedback please click here.

The Truth.

A truth that is not loved but excepted by mankind since human evolved was human suffering, pain and tears. There is none on the face of this earth who is bound to be happy at all times. Each one of us know that once in a life time a person has to own the gift of pain which is often regarded as an experience. Many a hidden times have existed of pain, anguish and mental torture provided by a moment which we call life. We often try to look for question that lay so unanswered in the bed of our soul, which slowly murmurs the exact time and space we require in life to except the truth which lies in the providence of a path we tread upon. There are traitors, betrayers, the ones who hate us, the ones who love us and the ones whom we love that we come across on every sort of road we chose to drive upon. But there are some very special people whom we often forget to realize that they through all the way long become our hidden strength, who help and love us but do not show and not a sound of hurt is heard. Their love becomes the unconditional one and a gift rarely someone is lucky enough to realize. Tanveer was a child who had the ability of immense tolerance and who made an endeavour that none feel sad and unwanted in his presence. He was our strength, a hidden strength that none could equalize even if one tries to be like him.

Tanveer, since childhood was a sweet and loving child to whom no one would want to give even a bit of pain or scolding. Each one of us wanted to see our little Tanveer laughing and playing, of course everyone felt for the other children of the family the same way too, but with him it was special. It’s an unexplained beautiful feeling that he was so special and the most beloved of all. Was it due to his short life or the probable reason that he being the youngest of all was pampered the most? If we ever talk about suffering the first word that comes in our mind are the pain and the tears shed by a person who was targeted miserably by torturous anguishing techniques of life. The forbearance has its own limitations; same was with our little Tanveer who was so new to this world of pain and tears.

The Horror

Somewhere around the early October, before 11th 2001, with the smiling face and the very buoyant attitude that Tanveer had, he was ready for school when suddenly he got pain on the two sides of his neck below the ears where the lymph nodes are located; due to which he wanted to skip the school for a day. As it is the very famous style of children to avoid school so our mother refused the idea of skipping school. But on the second thoughts, the pains in such an area were rare, more of an abnormal pain that a child who would want to skip school would complain about. This gave an alarm call to my mother acting upon which she confided into our father. It was indeed an alarming state. The first thing that struck our father’s mind was the mumps, but it was better to get the diagnosis done.

Tanveer was immediately taken to a pathologist by the name of Ms. Poonamjit Kaur who was not able to diagnose any such situation or infection that could be alarming. According to her Tanveer was perfectly alright, but this did not somehow satisfy any of the family members. Another pathologist by the name Dr. Mooju who was a renowned person in the field of pathology was approached by us. We hoped for the best and prayed that the second review would be normal enough, but call it destiny or our bad luck; hi-grade Non-Hodgkin’s Lymphoma T-cell type was reconfirmed, it was not the indolent one which would give us enough time to eliminate the blast cell from his body rather it was the aggressive which was a more dangerous and excessively quick in failing the body to survive longer. The rate of increase of blast cells was approximately 10% per day. The percentage of blast cells that were diagnosed in his bone marrow was up to 87% which is definitely not a small amount. We were all gathered up in one room praying that Tanveer would be totally fine but the broken voice of our father on the phone confirmed that it was not okay and the things were in really bad shape. Wouldn’t you like to know his age? It was a young and tender age, 11years old our little boy was when he got to enter this new world which was full of tyrants and others which we still might not be well aware of, the tyrants who just showed there ugly face to Tanveer through his life till the last date. May be they are as elusive today as they were then.

Action had to be taken fast as there was no time for Tanveer due to the illness’s aggressiveness. So, he was taken to APC, PGIMR (Advanced Pedratic Centre, Post Graduate Institute of Medical sciences and Research) Chandigarh where Dr. Marwaha took charge of his treatment and to set the protocol of his treatment, he got chemotherapy and radio therapy. The radio therapy was given for eliminating the mild infection he had in his CNS i.e. Central Nervous System. We were hoping that Tanveer would cure in this very hospital as it was well known for its Pedratic centre. We got Tanveer admitted in this hospital. His cloths, blanket and a bit of books and games were taken there for him to feel comfortable as home. Our mother would stay there at night and grandmother in the day hours. It was still difficult for Tanveer to be alone as he needed his brothers and sisters too, so daily after school we used to reach home, sterile ourselves and head for the hospital. Tanveer really found it comfortable as his brother and sisters and the other members of the family were visiting him quit often by then. We were getting a good amount of relief and hope from the doctors that Tanveer was now becoming alright. The prognosis in the first year was very good and even the doctors were happy with the result. But soon after a year Dr. Marwaha refused to treat him as he relapsed again which was a sore end to our happy moment and a big jolt to our hope. Would you like to know the exact words of the doctor? By putting yourself on the very place of our father who was listening to the doctor’s practical but harsh advice, you would definitely not believe your own ears. He said, “For the grade of his illness no such treatment is available in India as we follow the British protocol so take him back home and give him a happy life and let him eat whatever he wants and let him live the way he wants so that his life is prolonged a bit as there is nothing that we can do now.”It was not wrong of a doctor to say that but it was agonizing for a father to hear it for his child whom he brought up with immense love and affection. He came and told us the next step that doctor suggested us, but none of us could afford to take up such an advice.

Destiny

The cataclysm of our destiny crashed our hope that we had for Tanveer, which was harsh and painful as we never even could think of a time that we would eventually lose him in the race of time. Our father decided to let him have some more shots of chemotherapy with Dr. Behgal who was good in his field of Oncology and medicine. Tanveer had to be admitted to Cheema hospital, where he had to go through a protocol of strong chemotherapy. He was in the hospital for six weeks. The chemotherapy that was given to him had some side effects on his health too. He was suffering from serious vomiting losing his health which was deteriorating very fast. As recalled by our grandmother (paternal) he used to get such, severe convulsions that nurses and our grandmother had to hold his hands and legs. Due to these convulsions he even suffered from blood shot eyes which made all of us cry even looking in his eyes deep inside which said that he wanted to be free of all the pain he was suffering.

The aftermath of being in the hospital was so excruciating that Tanveer was finally depressed and it was perceived by him that he would never become as healthy as before. So, eventually our father brought him back home. But due to condition at home which were not hygienically appropriate for Tanveer, as we were having permanent carpet on the first floor and pets in the house, this became the basic and the first and the foremost reason to shift Tanveer to our grandparent’s house. He stayed at our grandparent’s house for about six months after the discharge from the hospital. Tanveer soon after six months of treatment again came out of the state of being called a sick boy and he was again under remission but this did not last for long as he relapsed again. Life was torturous with him and it seemed as if life had enmities towards his happiness.

The pain that was given by a thought of losing a beloved child was most feared by all in the family. We all decided to get Tanveer an Ayurvedic treatment which was carried out by Dr. Gulati for three months but this didn’t seem to have an effect over the blast cells as he again relapsed after three months.  It is so shocking that even a renowned Ayurvedic doctor can be so unprofessional about someone’s life. He prescribed medicines that were in the range of thousands, but the effect was equal to medicine at all. It is not that I might be writing against someone, but as a matter of fact even you would feel the same if you would be walking here in our shoes.

The pace of time was increasing its speed and the path we were following was becoming narrower by the passing moments as Tanveer was fighting with this ugly auto immune disease that was growing in his body. Tanveer went through another shot of chemotherapy, but this too did not seem to have any effect over Tanveer’s lymphoma. How eligiacally life was smiling to Tanveer. It was then decided that Tanveer should be taken to the US, for a better treatment. The doctors here in India said that it would be possible to save Tanveer as they might have better protocols for Tanveer. It gave birth to a new hope inside our hearts. The only thing we prayed day and night was that our almighty must keep this innocent little child away from such a life that was fond of making his moments greyer as the time passed, and a life in which the good health was mocking on his illness. Our questions which were all laid in front of us unanswered were playing the trick of hide and seek, if at a moment we thought we knew the answer, the other moment the same answer would transform itself ruthlessly into an unanswered form.

Tanveer was accompanied with our father to San Francisco, USA. They stepped in the US with a new ray of hope as it was presumed by us all that the protocol the Americans follow would suit Tanveer more. In the US Tanveer was given various vitamins, minerals and essential metals. The main motive behind this was building Tanveer’s body which was in a very bad condition. Many exercises and swimming was suggested by the doctors there.  His body started building a bit, but not as expected, the aftermath of excess of chemotherapy was showing its true effect on Tanveer’s health. Meanwhile Tanveer was going through a nourishment plan; our father came to know of a good homeopathic doctor by the name of Dr. Issels. Tanveer started making frequent visits to Dr. Issels for his treatment. Tanveer went through many tests which were not even in knowledge of our father. 15,000$ were spent over Tanveer’s treatment, but what ultimately our father found was a treatment full of false claims. It was obvious that this treatment had to be dropped.

Once late in the night Tanveer was suffering from an acute pain in the left shoulder. In a state of tension and fear, our father called 911 for help. As they reached they asked him to give Tanveer a pain killer Tablets and an ointment which was called icy-hot which was supposed to be massaged over Tanveer’s left shoulder.  As the pain killer and the ointment started effecting Tanveer’s pain and he comfortably fell in to deep sleep. Next morning Tanveer again suffered the same pain in the same area, he was taken for an x-ray where a peculiar thing was noticed which was both astonishing and painful.

The left lung was hardly to be seen. Tanveer was suffering from pleural effusion, which was the main reason for his acute pain. Pleural effusion is when the lymph nodes are swollen due to infection. Tanveer was immediately taken to the City Centre Hospital, Arizona from where he was shifted to Phoenix Children Hospital. Tanveer was admitted there, and his stay was of four weeks. A child who just stepped in this world had to see the life in hospitals and walking with the centreline in his neck which was inserted in his Jugular vein all the way long till the last breath of his life. Our father who had to see his child suffer so much had to keep his strength alive to keep his little son going. He spent on month on the chair which was beside Tanveer’s bed in the hospital. He spent sleepless nights just to ensure that his son sleeps well without any obstruction. Tanveer was finally discharged after four weeks. After two weeks Tanveer was called again for certain tests as to see how much Tanveer had progressed, but he did not, he still had blasts in bone marrow. The medicines which were given to him did not affect him even a bit. The doctors refused to treat Tanveer any longer as Tanveer’s blast cells had again started growing; it reached from 30% to 37%.

A Final Try

Life was torturing the little heart as a dagger that never wanted to stop until it troubled the last drop of his blood. Life was not in an ascending order for little Tanveer it was rather descending for him each time he hoped he will be alright soon, it was playing its best diabolically. They made their way back to San Francisco and booked a ticket to India which was to take off the next afternoon which was to depart at 14:00. Just then our father found out about a doctor in New York who was carrying out a research on the same problem as that Tanveer was suffering from.

He could have been a great help to Tanveer but by that time what our father had in his pocket was 120$ which would not be enough to reach New York or even stay there. Just then he realized that he had a friend who lived in New York for whom he had done so much, he gave Mr. Bittu a call and told him how things were going. Mr. Bittu offered him some help. He said that he would send the air tickets to them to New York by next day early morning and that they could come and stay with them. As Tanveer and our father waited the next morning, the tickets did not reach, That morning they made number of calls to him many times he did not answer the calls but whenever he answered he said “I am arranging for the tickets” and will get back soon. But the time was fast passing by and realizing this, dad gave him a final call, It was 11.30 am by now and the flight back to India was at 2.pm which they were deciding to skip if Tickets come. But Mr. Bittu at last said that he did not have money and that he couldn’t help them, it was sad to say this at the final moments If only he had said it yesterday maybe something could have been done for tickets. Our father realized that, when a person laughs, the world laughs with him, but when the same person cries, he cries alone. Ditched by a friend and betrayed by life, both made their way back home to India.

The fight for life

Nobody wanted to give up on Tanveer. It is but obvious that no one would want to lose a family member whom they love so much. Even if our hopes were smashed and lives colourless, we couldn’t give up trying, our father came up with a new and a much powerful treatment which would definitely cure Tanveer. The hope even if it was hopeless was so grasping that one could not leave the path of hope.
By the time Tanveer had his last days in the US he was suffering from facial palsy, a mournful paralysis. This ugly thing that Tanveer had to face was the result of the side effect of strong chemotherapy which later when he came to India took over the whole facial muscles of his. He could not close his eyes due to which he had to use the eye drops which would artificially wet his eyes; he couldn’t smile and laugh or even talk properly. It was tough for him to eat food which was in the solid form, so, the food had to be grinded and a paste had to be prepared. He was only able to have soups and pastes. Some more side effects of this treatment were, Tanveer lost a lot of weight i.e. from 50kg he reduced to 30kg because of excess of vomiting due to the digestive system which had become highly acidic in nature due to the medicines, as a result the muscles in his body were finishing at a very high speed; platelets which are required for clotting the blood when it bleeds out of a wound had fallen rapidly, it was feared that the centreline might make into such a place from where the blood could bleed unstoppably, so Tanveer had to be injected with butropase which would not allow the bleeding to occur; His spleen was enlarged which was a part of immune system; haemoglobin also had fallen drastically as low as 3-3.5% for which blood transfusion was a vital thing. Tanveer’s whole body was drained out of enthusiasm which he usually had, and he had become quite sceptical to accept that he would ever be healthy again.

A situation that I remember which is more of an unforgettable day was, when Tanveer was being taken for his regular weekly checkups to  Dr. Devgun; he started getting mild convulsions and his body temperature dropped and his skin was cold and slowly becoming blue, he couldn’t breathe properly and he started losing his consciousness and he could hardly speak. Our father speed the car and what ultimately we found that Tanveer’s haemoglobin had fallen very low. If that day we wouldn’t have arranged for blood transfusion in Mukut Hospital, it would have been fatal for Tanveer. It was so agonizing to see Tanveer in such a state. Tanveer was barely alive, and this day runs the shiver down our backs. In such a young age Tanveer had to suffer like a slave to this tyranny of life. It kept on eating Tanveer’s happiness and health like a hungry animal and we couldn’t help but try. But in spite of all that he suffered his height was not affected, he was 5feet and 4inches by the age of 13 years. He would have grown tall, handsome and an intelligent boy. But life wasn’t that helpful to Tanveer.

Our father started a new treatment for Tanveer. We were all sure that this would affect the blasts now, as our father now was working on it himself and we have never lost faith in him in whatever he did because when he would work, he made things happen. The Dendritic cell treatment and the blood irradiation were the protocol for Tanveer now. He would not have to face the horrible chemotherapy or the discouraging advices of the doctors.  Now he was going to be taken care by his own family, which would make him relax and feel better. He finally got what he wanted, total care only by his family members.

Dendritic cell treatment mainly targeted the increase of immunity; it fought the blast cells and destroyed them within the body. Tanveer went through a Blood Aphaeresis machine and the lymphocytes were collected. The T and B lymphocytes were then depleted and were collected thus, new type of cells were formed which were the Dendritic cells and were then further activated against the blast cells, which is called the Transformed Cell Re-effusion Therapy (TCRT), this terminology is our father’s which is nowhere else in this world. The Dendritic cells were grown in-vitro and infused in Tanveer. Tanveer was then given neupogen which was injected in Tanveer’s body in different directions in one go. It was to enhance the growth of the stem cells, hence, boosting the growth factor.  This in return would help the Dendritic cells to grow and colonize also it was a help for TLC which is essential for immunity to grow. As they would grow they would start destroying the blast cells consequently. This was the dendritic cell treatment. Whereas the blood irradiation was to increase the platelets count to stop the blood from bleeding. From 20,000 it would reach up to 100,000-150,000 within two days.

When the treatment was started Tanveer had 38% blast cells which were on the verge of increasing very rapidly, even faster than before, but the treatment did not let the blast cells arise, it suppressed them and eventually destroyed them. Tanveer’s centreline was side by side well maintained by giving hap-lock in which heparin was injected in the centreline. Tanveer was given Vitamin C I.V. fluids, supplements in the form of capsules and tablets. This was to build Tanveer’s health and his immunity. When this did not affect much, Tanveer was given H2O2 I.v in order to hyper-oxygenate his body and slow down the activity of the blast cells. But it became more of an aberrant situation as the blast cells’ quality of being active was becoming hyper instead of being less active. So, taking the consequences in consideration the H2O2 I.V.s was stopped right away. The only treatment that was playing a major role in eliminating the blasts was the Dendritic cell treatment, which brought down the blast cells to an amazing level and did not let them grow, the destroyed blast cells were destroyed for all the more to come. Tanveer was finally becoming alright. No treatment could beat the dendritic cell treatment as Tanveer’s own body was made to fight the disease which was getting the boost from his very own body. The only thing that was not in control was the pleural effusion that Tanveer was suffering from. As mentioned before this effusion was due to an infection which was producing watery fluid in his pleural cavity. This fluid created problem for Tanveer in breathing. The effusion had reached such a high level that Tanveer could not lay down and sleep. If he ever would try to lie on the bed the fluid would come up and not let him breath.  Tanveer spent sleepless nights just to get himself breathing properly. But for how long could he live like this, there had to be a way out of this problem. In order to get rid of the curse like problem, Tanveer’s chest was punctured and a 6 mm tube was inserted which was attached to a bag which was filled by at least ½ litre of fluid in it every day. The fluid had blast cells in it. The pleural effusion was malignant; it was full of blast cells that were being produced within the effusion. The blast cells in it were definitely controlled but not the production of fluid from the effusion.

The End

At this time Tanveer needed a lot of care, love and affection. He was going through a terrible phase of life. He needed a lot of understanding from his peers, parents and rest of the siblings in the family. Tanveer knew of what he was facings. We could lie to him but, the reports would not budge a bit from breaking his heart. He would ask the doctors and our father of what he was suffering with. His life had a catastrophic gait towards him and an aberrant behaviour towards us, as one moment it would showed us hope and light but the very next moment it would show us the dark side of his life which was killing his happiness and ours too.

He was a strong soul and a boy, who never gave up on anything, but his body was not as strong as his soul and as his will power was; it gave up on Tanveer. During chemotherapy due to improper care while injecting vine-cristine (a chemotherapy drug) in his left arm, it leaked and it formed apses on the very point which troubled him with its pain and hole which was formed due to excess of puss inside it, it troubled him for at least five weeks. The same thing happened on his left foot due to the same reason. Just a little boy who wanted to live a good life did not actually get life the way he wanted. The pricks that he endured on his body almost everywhere which would make a simple human give up on his/her life. The doctors often couldn’t’ find his veins as he had gained a lot of weight due to the steroids and the swelling due to the injections, they most of the time had to make several pricks to find the vein. The injecting of the needles again and again over the same area at a time and that too of a child, who was, merely 12 years, was so painful to see. It stabs our hearts when we see, what the pain would be that the little child suffered, the encroaching and the tiresome pain that was pursuing his body’s power away.  Not being able to move in a proper way, not being able to talk properly and also knowing what problem he had slowly strangled his interest in happiness as a result he was depressed. The depression was his big enemy, but what the child was suffering was immense in front of what we were consoling him with.

Now it was December 8th 2003, two months from the completion of three years of suffering. By now Tanveer’s blast cells in his body were only 8% but the effusion had increased terribly and no matter how we tried to exterminate it from his body, it just grew double. I was in the school, by the time I reached home Tanveer was almost gasping for breath.  Our father who knew of Tanveer’s breathing problem had gone to get Nebulizer which was used to dilate the bronchus and the bronchioles which could make the breathing for Tanveer an easier thing. Breathing by now for Tanveer was no more a function of the body but it had become a task which he had to carry out as long he would live. Tanveer wanted to use the washroom but today he couldn’t carry his IV stand which he often used to carry with him while in the house.

As the time passed it was becoming even more difficult for Tanveer to breath. He called our mother, grandma and told them that he was not able to breathe and felt a bit dizzy. The situation seemed very serious. Our mother called me while I sat to have food and asked me to call our father and tell him that Tanveer’s state was worsening by every minute. By the time I called our father Tanveer was fighting for his breath and with a heavy and mild sound Tanveer said, “Didi (sister)…I cannot breathe, mumiji (grandma)…I cannot breathe.” It seemed as if the little boy was asking me for help, a help that would release him from such a pain and suffocation. Tanveer’s eyes were closing and he was trying hard to keep them open to see all of us. But the moment was so panicky and agonizing that none of us could restrain from crying and trying to make Tanveer talk. Again and again the little boy who was trying to hold my hand was trying hard to catch even a single breath. Tanveer’s body was giving up slowly and soon his breath vanished into thin air.

We were trembling with fear of losing Tanveer. Soon one of the staff members from the office had arrived with the car, we picked Tanveer up and brought him down; we tried mouth to mouth artificial respiration and when that did not work we hurried him to the hospital. After reaching the hospital Tanveer was put on a stretcher and taken inside the emergency room. Every family member had gathered in the hospital for Tanveer. Mean while our father who had gone to get the Nebuliser had reached the hospital. The doctors allowed him inside the emergency ward.

The people around us were consoling us that the little one would be alright and that we must have faith on God who will only do well to him and us. Till the point of time we reached the hospital everything seemed to happen so fast but in the hospital, things were getting slower and agonizing. Each moment was filled with fear and unwanted thoughts and feelings. Half an hour had passed, no hope giving techniques or the consoling methods were working by now. Our father who came out of the ward told us that it was all over, but the heart was no to ready to accept the bitter truth. It was not possible to see the condition of our father and mother who had brought Tanveer up with love, affection and with big dreams in their eyes, as if Tanveer was a bud of flower once growing in their hands but now the same bud was dying out.

We hoped that we’ll be able to see Tanveer breathing even if not in a conscious state. We did not know what our destiny had chosen for us. People around us were consoling us, talking and looking at us with their eyes being curious and full of pity, but nothing was audible or perceivable at that horrible moment. The door of the emergency ward opened and Tanveer lying lifeless and motionless on the stretcher, the doctors said that he was no more. A knot of pain knotted the heart so tight that no breath or a word escaped, what escaped was a yell that called out to Tanveer. But he did not respond. Our little boy was no more. It seemed as if the cry would stop the hearts from beating and the cries would make our eyes blind. We felt that we would die right at that moment. With a shattered heart and a broken soul we took Tanveer back home. As if the blood leaked and spilled out of our hearts that made us feel as we had broken into pieces which were scattered on the ground and Tanveer was no more there to pick us up and gather us in his warm arms. All the relatives were informed of Tanveer’s demise. It was so hard to let Tanveer go. He died of pain, not the disease he had. What flashed in front of our eyes was Tanveer himself? Yes, it was him and the memories of the time he spent with us. Tanveer had to be cremated the next day in the morning according to the rituals.

The night was long and painful while Tanveer’s body lay in the main hall covered with white cloth as if he was not gone but was in a deep sleep. So peaceful and tensionless; as if he never had even a single problem; in spite of all the cries and sound of sadness and bloody tears, he seemed so undisturbed. Calm and as gentle as he had always been; the depth of his stability on face managed to take my heart where he had gone at present where I found that he had no problem there and he was living a blissful eternity. Back on materials; every hour was teasing us. There was no hope and desire in our hearts to live anymore, but the destiny wanted Tanveer to live. Tanveer wanted to live too, and today he lives in our hearts and in the deepest and most prominent part of us, our soul. Tanveer visits us quite often in our dreams and thoughts and usually talks to us for hours together. He loved us and shows his love even now as his love was not bound till the walls of this world, but it was far beyond that. One thing that Tanveer couldn’t teach us when he lived was that love had much more buried in itself than we had knowledge about. Today we lose ourselves in the practicalities of life, our mundane behaviour and materialistic logics, but his love brought us back to whatever we were and what we had to be. The divine being that exists inside us all, was revealed by Tanveer’s love. Probably his life was for us all and his soul for our souls…



Admin's picture

That is quite a story.

Submitted by Admin on Wed, 13/08/2008 - 1:04am.

Thank you very much for sharing it with us. It makes us feel deeply for you and we do understand how much you miss Tanveer.