Thank You from the UK

Hi,?and thank you for giving grieving people the chance to have a say. the following is from my blog .And this is how i feel . Its about my 10yr old daughter who lost her fight for life after a bone marrow transplant. The doctors had given her a 95-98 % chance of survival but she really got no chance of survival. Its about what she went through till the very end. I want to share it with every body out there. A human life is always full of many ups and downs. surprises, shocks, setbacks, disappointments, gains and losses.There can be many happy moments and sad moments in every ones life. And these may be connected to anything that one desires so and attaches certain meaning to. But some times certain events change your life for ever, never to return to normality. No matter how hard you try. May be it would be correct to say that it would be considered an an act of treachery to the loved one to FORGET and continue your own life as it once used to be. Fate is cruel. When it brings with it what we perceive to be benefits, we live in joy, yet in times of losses or sorrows we fall in to a simmering sadness and a feeling of eternal pain. The whole history of mankind is riddled with mystery from time memorial, whatever point of view it is seen from. Whether it is the creationists or the evolutionists. We can not get away from the fact that we are not in total control of our affairs. If we were, things would be different. And everyone would live a fulfilled life. And yet the ability to accept this simple understanding, can become impossible to digest and live up to. Some events in life are reasonably not too difficult to come to terms with. Things that can be replaced or changed. In these circumstances, time can be the best healer, time will bring wisdom, opportunities, learning, strength to move forward in a positive way. Yet sometimes nothing will ever work no matter how hard one tried. Some loses can never be replaced. They leave a permanent dent in ones life, a hollow space never to be filled with anything else. A vacuum that is only filled with a permanent presence of pain, anger, resentment and regret. it could be described as a reoccurring nightmare haunting you every moment of your life. Wishing how things could have been different. What if things were done in a different way. Seeing self punishment maybe the only way to redeem ones self, for being the catalyst to the events that lead to the loss of a life of the loved one. Losing a dearest one can sometimes become the most horrific and the most self-destructive event in ones life, Changing your life and the life of those around you for ever. For no peace can enter a heart where there is no contentment. Death is a natural process of life and it happens all the time. It has to be accepted as a part of life. There is no escape from it. Never. We see our predeccessor’s life passing before our very eyes from the moment we come into this world. We accept the timely end of life, for our selfs and others. In this universe of death and decay, everything will perish at its own time. But when it happens too soon and in a way that is not natures course, then one’s acceptance and coming to terms with it , changes. One’s view of life comes crushing down? Rights, wrongs, faith, prayers, godliness, godlessness, fate, power of prayers to change things, our ability to make a difference to our fate, to give it a course of our choosing. All come under the hammer of suspicion. And yet there still is no room for the final and the ultimate answer. Who controls who. Man is the dominant it seems in most cases. Until death and decay have their say. So one thing is for sure. Death controls us and every other living being. Death is the final frontier that will never be conquered. But death is also what hurts the most. Death of a loved one, a dearest one and the most nearest one. Especially if it is a child. Nothing can compare to losing a child. The pain may gradually decrease in intensity but the sorrow sometimes continues to deepen with every passing day. Leaving a hole that will never fill. Every body will deal with the death of a child in their own unique way. For parents it is the most trying time, some may come to terms with it, some may even only remember it as an unfortunate event in their life. Some parents will carry the deep scar it has left on their lifes. Yet there are parents who will become totally obsessed with the LOSS and will never give up the pain. They will feel as though they were betraying the bond they had with their child. A form of treachery. To carry the pain and to feel the guilt of being the cause of the child?s death will in a way provide relief and yet paradoxically cause more suffering and add more to the guilt. It was as though to say to the child, ?Look, I am sorry for what I did, I caused you to die?. It could take many many years before realization that they are gone and nothing can really be done about it and that it was never any one’s fault. They were meant to go. That is not enough. The question will still continue to linger for ever. Until maybe, just maybe, time truly becomes a healer. The following is the account of our little 10 year old daughter who we lost in November 2004. She died after having an apparently successful bone marrow transplant but having a graft versus host disease (gvhd) and many, many other complications that set in as a result of trying to control gvhd by drugs and in turn causing other organ failure. It is impossible to snap out of the cycle of sorrow, pain and suffering that my daughter Kiran endured through her 8 months of tortures stay at St. James hospital Leeds . As fate would have it we have many fine memories of our daughter Kiran. Although we have other children, everyone who knows us and knew Kiran, believed that Kiran was a special child, a very brave, sensible, wise and patient little girl who endured everything that was thrown at her while only being a ten years old little girl. Kiran had friends who were twice her age who she could converse with.

This is our tribute to my daughter Kiran Ashfaq 3.9.1993-17-11-04

Kiran had a condition called thalassemia major for which there is either a life long regime of blood transfusions or a bone marrow transplant. OUR brave little star kiran did not see thalassemia as a major problem for her self; she was always smiling and very brave. She managed her own treatment and if we ever forgot she would remind us. Children are truly wonderful at coping and coming to terms with any set backs in their lives. kiran did not start on transfusions until she was 6 years old. When we were all tested for possible bone marrow matchs, three matchs were found- brother, sister and father. At the time we were considered very lucky to have a full match; it was first time in the past 6 years that such a close match was found. After careful consideration we decided that we would go ahead and have a bone marrow transplant(bmt)for kiran, our darling daughter. Until then kiran carried on with the managment of her transfussions for a number of reasons. She had her spleen removed in mid 2003 Kiran never complained, not even once. Her transfusion managment continued and we eventually recieved a date for bmt- April 2004. Preliminary tests all showed KIRAN TO BE A CLASS1 PATIENT. Lungs, heart, liver ect were all in good condition. Her consultant at Leeds was happy with kirans pre-BMT condition- although she was ten years old she had only been transfused since she was six, so she was considered as a four years old thalassaemic child in terms of transfusion age for BMT purposes. It was a choice of our child living with life long thalassaemia or a BMT with+92% chance of success and eliminating long-term possibilities of thalassaemia related problems. We opted for THE BMT – BY LOOKING AT life without transfusions and more time at school(as she loved school) and less pain.We helped her to cope throughout the BMT. We had already brought her up as an extremely thoughtful, confident and positive child. She managed her treatment herself, mentlly and physically, she was a strong-minded child. We had major plans on what we would do during our stay in hospital-how she would enjoy her time and experience of a BMT – which would transform her and our lives. She loved books- so we took all the books,?pens and all the other things she loved- she was not the average 10yr old child into barbie and cartoons, rather she derived her pleasure from reading the books, studying and having a chat with an adult and not forgetting her love for teaching younger children and helping them have fun. Kiran was always smilling – she was known as “smiler”by all those in her school, students and teachers alike. On the day we took her to hospital she hinted that she did not know what to expect. She could not say that she did not want the BMT but she knew that it was a major event in her life. The chemo started and after ten days the big event of the BMT arrived. Kiran said she was SCARED! and that she thought she might DIE – although we never talked or even hinted at the chance of that happening and we ourselves never believed or focused on kirans chances of loosing the battle for life-as we were always looking at how successful other BMT had been. Bone marrow cells were infused at 5pm on wednesday with all our family members present. Following the next few weeks we waited while her counts came up. Her consultant was so enthusiastic about her progress that she said kiran would set the record for going home quicker than other children had. We were ever so happy and grateful to everyone for such an amazing progress. After almost 5 weeks she was discharged from hospital. As usual we wanted to take extreme caution with her care and as such we brought home all the things that were for hygiene in the hospital, leaving no chance at all of a risk of infection. Kiran stayed home from Wednesday untill Friday morning, When she went back for a check up and came back within a few hours. Kiran remained trouble-free through the weekend. BUT on Monday kiran got a temperature. I took her into hospital and she was kept in. Her drugs lines were flushed ? after an hour or so ?kiran collapsed. Things never got better from then on. And Kiran NEVER CAME HOME. Other than for a few hours at a time for a couple of weeks. From mid-May 2004 KIRAN NEVER STEPPED off the bed and began to develop severe complications such as GRAFT VERSUS HOST DISEAS (START OF A NIGHTMARE). But again kiran never said “why me” never complained, she showed patience, courage and strength-a brave Kiran went through torture, suffering and all the COMPLICATIONS you can imagine – a complete shock to us- a never-ending nightmare. Although help was there, nothing could prepare us for what happened to Kiran and us as a family. KIRAN LOST HER BATTLE FOR LIFE ON SATURDAY 12TH NOVEMBER 2004 6pm, in my arms while giving her her last cuddle and with her mum caressing her feet. But she was resuscitated and stayed with us for a few more days till wednesday 17th of november 2004 4.45am. We did want not let her go so easily. Before finally saying goodbye to all her helpers family, friends and all those who cared for her. May God bless her soul – she lived like a brave little fighter and died like one too-she loved and cared for the young and the old, her family, friends, teachers, school and those who cared for her when she was thalassaemic. We gave her more love in ten years than one can recieve in a whole lifetime. yet she was a wise, well balanced, well behaved and well-mannered child, complimented by all those who knew her. Although Kiran is not with us she will want us to thank her lovely school school teachers, all the medical staff and the nurses at ST JAMES HOSPITAL LEEDS, her friends, cousins, family friends, all those who prayed for her health continuously in those trying times for her and us. We would also like to thank the individual who sent us ?30 annonymously to help us, but as kiran would have done, we have donated that to her charity. We would also like to thank the uk thalassaemia society for their kindness and all the people who helped in any way they could. May God the all Mighty reward all those who have done good to our family and rememberd us in any way. TODAY SHE RESTS IN PEACE AND WE PRAY THAT SHE SMILES FOR EVER.

A million times we?ve missed you,
A million times we?ve cried. I
f love could have saved you, You never would have died. T
hings we feel most deeply,
Are the hardest things to say.
Our dearest one, we have loved you
In a very special way.
No light that was born in love
can ever be extinguished.?
Grief, Inc Forever loved 24/7 365 forever

Mohammed A.

The Open to Hope Community

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The Open to Hope Community Leader is here to answer questions, provide support, and maintain a healthy, positive environment at opentohope.com. This is the next line.

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  • Barb says:

    I also lost my daughter Lindsey at the age of 22. bmt/gvhd….she was the same kind of girl as your brave 10yr old dgt…email me back if you would like….thinking of you…

  • Izharul Haq says:

    Dear Friend:

    I cried several times reading through the text about your brave little wonderful daughter Kiren. I can feel the love you, your family, friends extended to this beautiful princess Kiren. But be assured that Princess Kiren is free of all the pain and sufferings. She is happy and playing with other princesses and princes in Heaven. God loved her and took her away and placed her in a perfect place where she can play, run, fly, eat, have all the wonderful things that no one can imagine. Although, I cried but deep down I know she is in a better place which gives us comfort. When ever you think of Princess Kiren please think how happy she is now.

    Izharul Haq

  • thank you to all who have commented about kiran. All your caring words are deeply appreciated.