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Sarah-Jane Diagnosis

This was written by my Dad about 19 years ago and last year typed a portion of what he wrote then with some more added to it. I read it today when I was in work big mistake as it made me want to cry but I couldn't because I was in work.


Diagnosis - October 1983
(The world of buts) </center>


The pager started to bleep. I was about to turn off the motorway in my friend's Rover after a hard day's work in Somerset. I was looking forward to the following day. We were to go back to Anglesey to view the house we had fallen in love with whilst holidaying there earlier in the year. It must be my wife chasing me to see when I’d be home for tea. I was running late. I decided not to phone as I was nearly home.

My thoughts drifted back to the last couple of weeks and how my middle daughter, Sarah-Jane, had been ill. Her condition had been steadily deteriorating. She was now so weak it was almost impossible for her to stand let alone walk. Earlier in the week the duty doctor seemed uncertain as to exactly what was wrong with her. She was concerned about her jaundiced appearance. Indeed, the morning following our consultation she called to see Sarah-Jane on her way to the surgery. Eunice, my wife, was to have taken Sarah-Jane back again that morning. I wonder how they had got on there?

On turning into our road I was greeted by the unexpected. Our car which should have been at my friend’s house was parked outside. I was met at the door by my mother-in-law. I immediately knew something was wrong - but what?

My wife greeted me in an obviously distressed state to tell me our GP would be calling shortly to explain what was wrong with Sarah-Jane. Within minutes he arrived to break the devastating news that she had leukaemia and had arranged for her immediate admission to Gloucester Hospital.

After a quick packing of clothes for Sarah-Jane we left with her for the hospital. We arrived after a quiet journey. We had each been silently thinking our own personal thoughts and facing our own personal fears, not daring to convey them to each other lest we alarmed Sarah-Jane.

On arrival there I carried her in my arms to the children’s ward where we were warmly greeted by friendly staff and ushered into a side room. We left Sarah-Jane for a few minutes with a nurse to settle in while we went to talk to a doctor.

She introduced herself as a haematologist and went on to explain that they thought that Sarah-Jane had acute lymphoblastic leukaemia She explained what this was and the proposed treatment for the next month. When we broached the subject of what expectations we were to have for our poor daughter, we were told that her age and sex were in her favour and that they were having considerable success in treating this type of leukaemia. But, and there always seems to be a but, much could go wrong and no promises could be given. She was critically ill.

We returned to Sarah-Jane’s room where she was told that they were going to give her some blood to make her all pink again and feel a bit better. She came, in her trusting way, with me to the treatment room. memories of the ensuing half hour will always remain vivid. Her veins were so small and weak that it took many attempts to get the butterfly into her vein so a drip could be set up. Her screams haunt me to this day. I tried to give comfort and reassurance and tried to persuade her to co-operate. I felt like a real bastard and tried my best to hide my tears for her. I would have gladly traded places despite being a coward when it comes to pain. Why did such a young, innocent, loving little girl have to endure such pain and fear?

Eventually Sarah-Jane was back in her bed with her drip established. She was demanding her comfort blanket which we had forgotten in our rush to get to the hospital. There was only one thing for it. I left my wife with her while I dashed back home to fetch it. I couldn’t bear to see Sarah-Jane so unhappy and knew her blanket would help.

Fortunately the hospital was situated close to the ring road away from the city centre. I discovered the performance of a 3.5 litre V8 engine. My friend’s Rover completed the twenty four mile round trip in twenty minutes. Looking back it is easy to see the foolishness of this action. At the time it seemed different.

Back at the hospital a mother’s love combined with the comfort blanket which had been her constant companion at night ensured that Sarah-Jane’s mind felt better. The slowly dripping supply of red life giving blood into her weakened body was gradually ebbing strength back into her. Warm sleep soon enveloped her bringing with it relief from the torture of the recent past. The comfort and warmth of her mother’s body combined with familiarity of her cot blanket seemed to have magically transported her back to the security of babyhood. In those day’s her mother’s body had provided all her needs and life was so simple and secure. The thumb being sucked in her mouth reminded me of those early days with the great hopes for a long future when as a baby she had suckled at her mother’s breast till sleep took over as now.

That night sleep did not come as easily as the tears. We wondered why it had to be our daughter. Why did it have to be her? It wasn’t fair. She might die. How could we live without her? No she couldn’t die. We wouldn’t let her.

Then we realised. Yes, she could die. We had to accept that. But, and there is that but again, we knew she was a Brace. She was a fighter. She was loved. She wanted to live. That was it. Let’s get on with helping her to regain her health. At last, cuddling together, joined in love, eyes now dry we knew sleep would soon envelope our exhausted minds and bodies too.

Saturday, it’s 7 am. We’ve slept for a few hours and awoken to a new day. What a nightmare I’d had. Thank goodness that awful dream has gone away. I must go and give Sarah-Jane a cuddle to reassure myself she’s alright. Then I remember . That nightmare was reality. The tears of despair briefly return. We must get up and prepare for the ordeal of the day ahead of us.

On arrival fairly early at the hospital we found Sarah-Jane sat up in bed watching children’s television. What a transformation! It seemed a miracle. Here strength, her happiness, her appearance, all had dramatically improved. She felt a lot better. She even agreed that there had been some point to her suffering of the previous night.

That first all important lesson had been learnt. The doctors and nurses were on her side. Even if what they did to her did hurt, or for a while made her feel worse, she now knew it was for her own good.

A little later on the doctor came to see us again to explain how Sarah-Jane was going to be sent to theatre where a general anaesthetic would be administered so that they could undertake a lumbar puncture to confirm their diagnosis. Sarah-Jane was quite happy about the whole procedure and was also relieved that the anaesthetic was to be administered through her drip. No more needles to be endured today!

A little later Sarah-Jane was whisked away to theatre. This was the start of another ordeal for us. One we would soon grow used to - waiting! We knew she would be away for some time. We knew there was little risk from the anaesthetic but, yes that but again, there is always a risk although slight. However, the chances of contracting leukaemia had been slight, but . . .

We popped out for a short while to escape that stifling hospital atmosphere , but were soon back. Time passed slowly, very slowly. We experienced that anxiety which most parents must go through at these times. Would she be alright? There wouldn’t be any complications, would there? We tried to think positively but , yes but, the nagging knowledge that the seemingly unlikely was possible made this hard. The chances of her having leukaemia were really remote but, again - but, it had happened.

It’s strange looking back now. She was to be put under anaesthetic many times after this and we didn’t bat an eyelid on these latter occasions. There were never to be any worries or nagging fears. Just occasionally the casual question - “ I wonder what’s taking so long today?” No fears, just trust to see us through. We’d often pop out to shop without a worry, safe in the knowledge everything would be alright. After the first endless wait, when everything went well, we knew we had to, and could be, positive about this in future, We too, like Sarah-Jane, had learned our first lesson - to trust and cast aside the “buts”.

This really set our outlook for the future. With acceptance of the worst scenario, death, it is easy to grasp the important points positively and just not expect or worry about things getting worse. If it does get worse, don't assume the worst - that things will get worse still. Even when only a slim remaining grasp on life is left there is still some hope there. Hope is only lost when that early final breath is drawn. Even this is not an inevitable outcome, even when a life may hang in the balance for days or even weeks. Always make the most of what there is. Feed off the positive things, feed off life itself.
Sarah-Jane eventually returned from theatre. All was well. We later received confirmation of the doctor's diagnosis. She was suffering from acute lymphoblastic leukaemia. Somehow those words were starting to hold less fear for us.

That evening sleep was again slow coming for us. In bed that night we talked and talked, and talked again. The "why?" questions were asked and found impossible to answer. Then the "it's not fair" scenario was discussed. We agreed - it wasn't fair but, yes - but, it had happened. "Why us?", ah! that's a difficult one. We talked about life and death, our parents, the fact we had each recently lost a parent early. We'd also lost a friend who committed suicide with post-natal depression. We also had some debts, and now - this! This was personal, very personal, and to be attacked through your child . . . It seemed life was utterly determined to kick us in the teeth, and this was only an early attempt. Little did we know then that life was to prove very good at this over the ensuing years.

Then we talked about Sarah-Jane. How she was the only unplanned child in the family - the "accident". She had then carried on to always make her presence felt. She seemed to rule our lives. Now this - ruling our lives again - although not in a way any of wanted. Then we talked about her dying. What we wanted for her if she was to die. What arrangements to make for the funeral. This really brought the tears and hurt like hell. We didn't want to talk about this as it was a case of facing the unacceptable. However, dealing with this was one of the most important things we ever did. It enabled us to make decisions while emotionally capable and, more importantly, enabled us to put these matters behind us - dealt with, accepted. We could now concentrate on helping Sarah fight her illness and get better. She is a fighter. She will make it. With these thoughts life could become more normal.

Love soon drew us together again and then at last, now totally exhausted, sleep rapidly returned strength to two numb minds and bodies.

Sunday arrived, a sunny day. It seemed a more normal day. We retrieved the children from their grandparents. I tried to explain to them about Sarah's illness without letting on how serious it was, although they were aware she was very ill. A family visit to Sarah-Jane seemed to cheer up everyone and we faced Monday in a positive way. Eunice would have to spend each day with Sarah-Jane whilst I tried to continue with my contract in Somerset.

The routine was set. I'd go to work each travelling south and return to the hospital which was north of us. My wife had spent the day with Sarah-Jane. We returned in convoy to our friends' restaurant where our children had been since leaving school and the youngest, only two, had spent the day. Thank goodness for friends. Had life ever been different to this?

A meal awaited us, full restaurant service, and good portions, followed by a two stone weight gain for me over the month! While we were eating, one of our friends took the children back to our house and put them to bed. They baby sat for us till we arrived back ourselves. This support was invaluable.

After the first week we had problems with the car and I found myself driving to the hospital before work as well as after. I was travelling about 200 miles a day - expensive and tiring.

The routine soon developed and before I knew what was happening I was told that Sarah-Jane could now come home. She was so weak and had lost so much weight. Unable to walk, I carried her out of the hospital tucked up in one arm like a baby. She was so light, looked so thin and ill. Her hair was starting to thin with the effects of the chemotherapy treatment which one night earlier on had nearly cost her that most precious commodity, her life. This was due to an adverse reaction to one of the drugs.

To have her back home re-united as a family was marvellous. It was the start of a new routine. Sarah-Jane would have to travel daily to Cheltenham for a course of radiotherapy treatment which was completed just in time for Christmas.

Christmas Day saw Sarah-Jane opening the presents we had thought she might never see. That day and Boxing Day saw all her remaining hair fall out in handfuls till we had our own Kojak. She was proud of her baldie look - it brought sympathy and gifts! A badge to be worn with pride, and I'd been upset at the prospect of her hair loss!

After Christmas our life changed again. The children can't go to school as there is a chicken pox epidemic. Chicken pox could be fatal to Sarah-Jane. None of the children have had it so they have to stay at home, taught by a home tutor and unable to visit their friends.

Eunice is now suffering with chronic morning sickness. She fell pregnant during Sarah-Jane's hospitalisation. Sarah-Jane is over the moon and wants a little sister, which will even up the boys and girls. I'm left taking Sarah-Jane to the hospital on Mondays, and doing the housework as Eunice can't cope with that as well as looking after the children. I'm exhausted trying to cope with all this on my own and work as well. Depression starts to set in. The only glimmer of hope is the thought of the move to Anglesey. That's another story.




Leukaemia - Positive Acceptance


Many parents find it almost impossible to cope with either the diagnosis of leukaemia or the loss of a child with leukaemia. The initial thoughts always tend to be the negative ones - the "why?", the "what if?" and the "if only . . ." These thoughts are of course only natural and are just wishful thinking - the clock cannot be turned back. It is essential, for your sanity, to accept the situation you face, however unpleasant, and make the most of the unacceptable. In other words you must accept the unacceptable. However black things may see at the time, there is a future. Whether it is believing positively that a successful remission will ensue and refusing to accept defeat, or if finally defeated, to remember that the one who died would wish life to continue for those remaining. Their love for you is all you need for a reason to go out and get on with it. If not for yourself for the sake of the loved one you lost. They would not want it to be otherwise. Let them live on through you - they've shown you their strength and courage - now it's your turn!

Think about their life! It may seem to have been cut short, possibly pointless, but if you try you can, I believe, see a purpose in it all. Even the loss of a very young child who has hardly started to live has a purpose, even if only to make you review your own values and goals in life - to see what is important to you, to see where need is in this world, to see where we can each make our own small contribution to this life and to our fellow man.

I faced these challenges myself, firstly when my daughter Sarah-Jane was diagnosed in 1983 and when she died in 1990. She has changed me. I hope she has made me a better, more caring, more loving person. She has taught me a lot about unselfishness. Right to the end she only worried about others, rarely herself. If only we could all achieve such status.

Facing the anguish of my personal loss when Sarah-Jane died I suddenly found out so much I never knew about her from her many friends. Each had their own personal memories of her and the way she had helped them, and about the way she was - her instant ability to care about others whom she considered less fortunate than herself.

Less than forty-eight hours after she died I rose early in the morning unable to sleep and wrote about her, trying to put my thoughts about it all into perspective. Reproduced below is my description of Sarah-Jane exactly as written at that time.



Sarah-Jane Brace 5.30 am 16-9-90

If it is possible to sum up Sarah-Jane up in a word it would be "love", in a phrase it would be "love of others". This was initially conveyed on first meeting her by that ever present smile which always warmed me and all those she met. Even those who met only briefly were always affected by the strong spirit and personality she possessed. She enriched everyone she met.

To me Sarah had two lives, each of seven years. the first seven years were spent as a very normal little baby girl still growing into a young child. Always affectionate and cuddly and sensitive, she gave no indication of the metamorphosis about to happen. When her leukaemia was diagnosed I just didn't see how she could possibly cope with the treatment that lay ahead of her. Of all our children I felt her to be the one least able to cope. How wrong I was.

During her treatment she nearly died one night and it seems as the Sarah we all know and love was then born. This was the birth of Sarah the young lady - the new Sarah. In the space of a couple of months she matured by years and already showing signs of her caring for others.

Twice with Sarah we have asked the question "why?" First when she was diagnosed and again when she finally lost her fight for life. The answer was not obvious to me at first but I've come to realise that the reason for these are simple. Sarah has a mission in this life to fulfil and obviously has managed to do this in fourteen years. Sarah has taught me so much, giving me a true insight into the value of life, one's priorities and the importance of love and caring.

To everyone Sarah is her smile, her care and consideration for others, her determination, very importantly her sense of humour and just being herself. many people have told me of the inspiration she provides them with, she gave them the kick up the backside, sometimes literally, that they needed. They had been feeling sorry for themselves with their problems which paled into insignificance against what she had faced, yet she was happy and enjoying life.

Even in pain she did not complain and always thanked the doctors and nurses even when they hurt her. During her last spell in hospital I was surprised she did not use those famous words, "It's not fair!" about her treatment. The only time she ever said that was when she was not allowed to eat. Food was the pleasure Sarah enjoyed greatly and shared with others through her cooking.

Mention of Sarah is never complete without her cats. She loved her cats so much and I well remember her cats were always with her and she loved baby kittens even to the extent of them sleeping with her without her squashing one.

Sarah is one of a large loving family and I am so proud to be her father. She taught me so much by her example and made me a better person. Although her body is no longer needed by her she lives on with us and in us, She will always be talked of in the present tense and she lives with us, guiding us and will always be one of our six children.




* * * *



I hope this passage gives some idea of the way I gathered the positive side and made sense of the nonsense of her death.

I often wondered how Sarah-Jane really felt over the years, coping with the fears she must have faced. I am convinced her strong faith in God gave her great strength and she never showed signs of fear of death. This I feel was borne out by a strange thing which happened the day after she died. I found a piece of paper on the floor - a piece of schoolwork I hadn't seen before. I feel it shows she had a greater understanding of life and death than one expects from a fourteen year old. It convinced me she had no fear of death. To her death was but another step along life's never ending path. I could not be too sad about what had happened - she would not have wanted it. Besides I was so proud to be her father - something that can never be taken away. Maybe her essay might make you rethink about life and death.






Sarah-Jane Brace


describe


An Old Woman



An old woman has got grey hair. It looks like silver in her hair. She is old, her skin is all hard and crinkled all over her body. She looks so pretty in her dress and silver hair. She looks like she is an angel from heaven. her silver hair shines so bright when the sun is out and shining. When the sun is no longer shining her silver hair looks so cold, no longer pretty. She looks so old but she is like she is so young. No longer she lives, no longer will she be in pain, no longer in the world. It is like she is still here on earth but I know she will be back some day. Her curls in her hair are like a merry-go-round.















A Frightening Experience by Sarah-Jane Brace


Homework 12 September 1988


I was seven years old and in November the doctor came to tell my mum and my dad that I had leukaemia. I went to Gloucester hospital in to the children's ward. I went into a cubicle of my own. I had a drip in my arm, and it took the doctor five goes to get it in. I had injections in my bottom and drugs put in my drip.

Before I was told I had leukaemia, I was always ill, and when I got better I became ill again. The my mum took me to the doctor and he took my blood sample.

Every day the nurses came to put more of the medicine in the bag on the drip. I watched television most of the day. When my mum came she brought me toys and jigsaws and I would play with them. My dad would come to see me at night when he finished work. One day my auntie came to see me. She was pregnant. After three weeks in hospital I went home but the day before I had a drip put in and one of the nurses said "I hope you did have a drip in." In the morning, I had the drip taken out and I packed my suitcases and bags. When I came out of my cubicle, I gave my plant to my favourite nurse. They called her Lady Diana and there was another nurse called Mrs Mop. When I started to walk down to the car, I had to stop. Dad ran to the car and brought it to the door. Then he carried me to the car and mum and dad carried my things. When I came out I went to my own bedroom.
I went to a special hospital to have more treatment. I had a wig made and a mask. It was hot and sticky. This was my most frightening experience. I still have to go for check-ups.


Sarah-Jane's Diary 1987 (age 10)


Sunday February 15

Today dad took Ginger the cat to the Vet. When dad came home he was crying. He came in and told Matthew and Nathaniel that the vet put Ginger down. Dad said "I had to have Ginger put down so he would not die in pain." After a bit we went outside to bury Ginger. Dad dug a hole to put Ginger in. The dad asked Matthew to go and get a feed bag. Dad put the feed bag over Ginger, then he put soil on top of the animal feed bag. Matthew and Nathaniel were crying.


Wednesday February 18

Today i had to go to Liverpool to have my bone marrow tested. We went in the car to Liverpool. When we got there we went in the hospital. When we got in I went to have my blood taken. Then we went upstairs to D3. I went to my bed and I had to go into the room where they do the bone marrow tests. I had some gas to put me to sleep. When I woke up I had a drink. Dr Marten said "You can go home." Dad carried me downstairs. the we went to the car. Dad parked the car outside a shop to get some dinner and drink. When we had eaten our drink we started to go to the RSPCA to get a cat for Nathaniel and Matthew. When we got there Samantha was asleep. So we all got out of the car and went to where the cats were. There was a cat dad liked but it was sold. So I said to dad, "There is a kitten in this cage." Nathaniel saw a ginger kitten but dad did not want a kitten. But dad got it. Dad went to the office to pay for the cat. Then we went back to the car and went home. When Samantha saw the cat she said "Ginger! Ginger!" Samantha, Nathaniel and Matthew were happy. When we got home we said, "Mum! Mum! Ginger! Ginger!" Then dad came in with the cat. After an hour dad told mum I was kicking and thumping the doctors and nurses at the hospital.


Thursday February 16

This morning Nicola and Stephen saw Rum the cat on the side of the road. They went and told dad. I saw dad get Rum and he took him back to bury him. When I came home I made a cross for him. Then I put it in the ground.

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