22. The Journey Begins.....

Tony was started on Copadin 1, this was the first of five days of chemotherapy. He was very chirpy all day , and even though he was on a drip it never stopped him from messing around.

I couldn't keep up with his appetite, he was eating like mad and couldn't seem to get enough food, probably a side effect of the steroids that he was now taking.

So far so good, no sickness and apart from having to drag the drip to the bathroom every 2 minutes the ordeal didn't appear nowhere near as bad as we expected.

As for me.... how can I put into words how proud I felt of this courageous young man. I stayed until 7pm that evening and then headed to Clic House to spend another night away from home

21. Preparation Day

Today was preparation day for the start of COPADM 1, in other words the start of the intrusive chemotherapy.
He had to endure scans and an echo of his heart to ensure he was well enough to start this gruelling treatment., tests revealed that his platelet count was low and this sadly gave him a bad headache.

I was staying in a house close by provided by a charity called CLIC (Cancer and leukaemia in children), without their help I don’t think I would have been able to have coped.
There was another couple staying there who were from Greece, their son George had been receiving treatment for quite a while, and although we were all going through the same it was really hard as the Mum spoke very little English.
She found it difficult to visit the hospital without getting too upset and so spent most of her days at the house cleaning, we all deal with these tragedies differently.

My daughter had also come to Bristol to stay in the house for the Christmas period, this was certainly going to be one that none of us would ever forget.
For me it was one of the first time I recall my new partner having a problem with alcohol, he got very drunk with the Greeks, however as a lot had happened during the 10 months that we had been together I brushed it aside assuming that it was his way of dealing with things….how very wrong I was, and how much I would have to pay in the future you have yet to discover.

20. A Little Revenge

Sunday

With the letter compiled, full of the emotions that I was feeling towards this man and his family, off I set determined to seek some sort of ‘revenge’ albeit only a fraction of what I really wanted to do.
The previous night I had stayed up all evening planning how I was going to ensure that this piece of filth would not get away without me having my say.
I had arranged to pick up my sister as she wanted to make sure that I never did anymore than I had said I would and get myself into trouble.

So together we took James back to the house and handed him over to spend Christmas with this family, instead of with us and his brother who was possibly going to have his last Christmas ever.
After dropping him off we took a copy of the letter and delivered it to his parents house, after all they were as much involved, they were part of 'The Team'.
We then went to his place of work and waited….. Armed with the card, letter and a leather belt, I marched in through the store to confront him.
He saw me coming and tried to escape to the store room, but as previously said, nothing on this earth was going to stop me…I chased after him and cornered him so that he had no other choice than to face me.
I forced the letter, card and belt into his hand and said these words which I remember as though it were yesterday…

“You **********. The scum of the earth, how dare you send MY son a card and have the nerve to write from 'Dad' inside, after all the lies that you have said about him to the courts to ‘win’ custody of my baby. You kept hospital appointment letters for Tony which may well have been the difference between life and death. Have the card back Tony doesn’t want it and take this letter, read and digest how you and your parents have torn my family apart, and then do us all a favour and take the belt and hang yourself from the nearest rafter!!”.

The whole of the Electrical Store when deadly quiet and not one person attempted to stop me from having my say….
They say revenge is sweet….No way, it didn’t stop the fact that Tony was possibly dying and we were to spend Christmas in a hospital 120 miles away from James.
Where was I going to get the strength to help these children?…I was so lonely, nobody could possibly understand. How could I give all 3 children the 100% of me that was needed, there wasn’t enough of me to share around.
But from somewhere the strength came and I pulled myself together and drove back to Bristol the following day to start all over again

19. A Woman Scorned

Laurrie and James were settled in bed for the night, Tony was in hospital 125 miles away being cared for by David and for the first time in what seemed like an eternity I was able to sit in my own home and reflect over the last 10 months.
I felt as though I was being punished for walking away from a marriage that was slowly destroying us all, more to the point my children were the ones who were suffering…But what would have been the consequences had I of stayed ?
Tony would have still got poorly and then what would have happened, no doubt my ex would have made a great show for the outside world at what a good Dad he was , but no-one truly knew how he had been treating them. Would he have started to talk to Laurrie and Tony ? Had Tony got cancer because of the stress that he put him through? Would James have been safe….Would I have been encouraged to give up my job, and he provide for us instead, so that I could look after my children as a mother should, instead of being the breadwinner that he expected me to be …and how dare he send a card with ‘best wishes from Dad’….he wasn’t his Dad, he gave up that right when he took James from us and lied and lied and lied, and had now taken to sleeping in the same bed as my little vulnerable little boy. Tony’s biological Dad hadn’t been around since he was 2, but this was the man that despite how he treated him, Tony regarded as his father and even took his surname.
So many thoughts reeling through my head, and I knew all the answers…the hatred towards him started to build and build as the evening progressed, I truly wanted to kill him. My little boy was safe in bed upstairs and I had to give him back in the morning. I cannot even begin to put into words how I felt, I was being emotionally ripped apart, I just couldn’t give each of my children the 100% of me that they all needed, wanted and deserved.
And where were MY family when I needed them, 4 sisters who were all mothers themselves and a father shacked up in another country with his new wife. I had one sister who couldn’t do enough and looking back I should have allowed her to do more but because nobody else was forthcoming it didn’t feel right that I should put such a heavy burden on her shoulders, and so all my heartache was passed onto my new partner David.

That evening I wasn’t able to sleep and decided that I couldn’t go back to Bristol without speaking my mind to my ex and passing him back the card as Tony had asked me to do.
I knew that he would be working (in a large electrical store) and that once he saw me he would run, and so I decided that my best option would be to put what I wanted to say in writing so that I could hand it to him if I couldn’t get the chance to talk to him.
I also decided that as his parents were also ‘part of the team’ as the judge had said that they should also be given a piece of my mind. After all this normally feisty little woman that I am, had been unnaturally quiet over the last 10 months so as not to upset James. However the time had come and I just had to do something….
And so all through the night as my children slept , my thoughts were put into writing of what devastation this man and his parents had done to me and my children through their lies and actions.
Tomorrow would my day and come hell or high water nobody or nothing was going to stop me……………..

18. My return home

I was really anxious to see Laurrie and James away from the hospital and be able to explain what was happening to they’re brother. As Laurrie was 17 at that time she fully understood the situation , but how do you explain to your estranged 6 year old son ? …especially under the circumstances.
The Clic Social Worker was fantastic in this area and was able to give me some good sound advice. She provided me with a little book based on the ‘Little Men’ characters and the storyline was about a child who had a tumour. The book was interactive in that James would be able to colour things in and add his own feelings etc.
When I collected James from his fathers house he was sent out to the car on his own, holding a card in his hand. When we arrived home I discovered that the card he had was addressed to Tony at the hospital. When I phoned Tony later that day and told him he asked me to open it….inside was a ‘get well’ card signed from ‘Dad’.
Tony was really upset by this , this was from the man that had the audacity to lie in court about my whole family, Tony included, to enable him to win the residence order for whatever purpose he had in mind. Tony’s reaction was ‘give it back to him Mum and tell him to shove it where the sun doesn’t shine!’
I couldn’t believe that this man was still prepared to hurt my children, he must have known how Tony would have reacted after all what he had done to us, or was it a case of him thinking that because we were facing death that all would be forgiven ? Well he would be given that answer soon, but not today, today was for me James and Laurrie and no-one or nothing was going to upset us anymore.
Today was quality time with my 2 healthy children while David was pampering Tony 125 miles away.

17. Time To Summarise

For any new readers please allow me to bring you up to date…

* Left husband with 3 children in tow as he refused to leave the marital home, we just packed up when he was at work and moved into a rented house.

* 6 weeks later my ex refused to return my youngest son (5) after a weekend visit with him, the police would not intervene even though I had a letter from his solicitor promising he would return him. This forced me to take court action, the judge ordered Social Services to write a report but allowed him to keep James with him for the interim. (the older 2 were not his biological children)

* The report was lengthy as during this period James exhibited unexplained sexualised behaviour when he was in my care, which was really alarming. Things were said to both me and his brother and sister which were disturbing and also drawings were done.

* Whilst waiting for our case to come to court we were served an eviction notice as the landlord wanted the house back for his family. We were given temporary accommodation by the local authority while a new house was being built and we would eventually become eligible for.
However this was yet another nail in the coffin of our defence to get James back. It wasn't looking good, I had to give up my 'high powered job' to show 'commitment' said the barrister.
As at that time I was on an extremely good salary I was not entiltled to Legal Aid and had to fund all the legal costs myself which ran into thousands of £s. He on the other hand was entitled, as when we were together I was the breadwinner of the family as he refused to work. Obviously he was then able to employ a barrister from the very beginning as he wasnt paying!!
The irony of it is that I was probably penalised for having a well paid job to support my children because he wouldn't or couldn't......

* When we eventually got back into court 7 months later, as James had made no ‘disclosure’ to an independent witness , the sexualised behaviour was basically ignored and the judge decided that it would be too upsetting to up-root James again, and he should stay with his father during the week and with me at weekends! (Even though Social Services were very concerned , and didn’t want the siblings to be separated)It was surely a case of possession is 9 tenths of the law, although nobody would have the balls to admit that.

* Tony was really upset that the courts wouldn't allow him or his sister to speak up in court as they were considered to be minors. None of the evidence that they provided was taken into account My now small family were trying to adjust without James living with us when Tony was taken ill, it was only a matter of weeks after the courts decision, and this often makes me wonder if the upset and worry helped bring it on…

* My father decided to up-root with his wife and live in Spain just weeks after the court case. Not that he was any support, as since he married Judy whom he met within weeks of Mum dying and getting married 4 months later we had little contact with him.

* Tony was admitted to hospital for what they thought was Hepatitis , but sadly turned out to be cancer, he was 15 years of age ..

* So here we were , days before Christmas , 125 miles from home in a hospital. Tony about to commence chemotherapy, Laurrie trying to study for exams and James living with his father against my wishes.

So there we are dear readers, are you ready for some more?

16. The Sperm Bank

So here we were one little 15 year old boy suddenly changed by having his hair shaved off and evolving into a young man…..
After a lot of tears with laughter following the head shaving event it was nearly time for us to travel to Southmead Hospital for a sample of sperm to be stored.
Sounds easy enough doesn’t it, but remember we are talking about a young lad who had only recently been going through puberty…
It was only a couple of hours before we were due to depart that we were informed that the ‘controlled’ circumstances would be him put into a room on his own to ‘get on with it’!!
The whole ward was filled with laughter as all the adults knew where he was going and as you can imagine the air was blue with hidden innuendoes.
The Ambulance crew arrived to take us and the female attendant was an extremely large lady who towered over my 5ft frame. When I told her why we were going to Southmead she made the driver stop on a main road and told me that I had to go in to buy him some ‘reading material’ to help him along.
How embarrassing….there I was 5 feet nothing trying to reach the top shelf to buy a dirty magazine for my 15 year old son, and then even more embarrassed when trying to explain to the shopkeeper ,who had to get one down for me, that it was medical purposes… ‘yeah as if ’ he must have thought!
On arrival we were given a talk as to the reasons why this was to be done and consent was given, Tony was given a little pot and escorted to an office …’No way’ I screamed you cant expect him to do it here. This was the ‘controlled area’, eventually it was agreed he would go to the Gents to do it.
I sat outside waiting for about 15 minutes making small talk with the receptionist worrying that he wouldn’t be able to ‘perform’ his task when out he came.
When later we spoke about it he said ‘Yeah it was fine, I was squeezing spots for 10 minutes’ !!!
The mind boggles …He was going to miss so much in life.

Back to Bristol Children’s Hospital where David travelled back up to stay overnight with Tony and give me a chance to go home. I was to return the 125 miles to spend the following day with James, this was to be the first time of seeing him since his brother was taken ill and the only time I would get to see him before Christmas.
I was so angry, so hurt, absolutely boiling with rage, so many emotions .Was it not enough that I had a son with cancer to deal with ? Now I had to put the other calm head on my shoulders for James, the other son who was living with his father and showing unexplained sexualised behaviour at the age of 6.
Angry doesn’t even come close, I was ready to murder and if I never had so much to lose I probably would have !!!
Who said being a grown up was fun …when we are kids we cant wait for the day that we are totally independent…if only we knew.

15. The Day His Hair Was Cut Off ....

Today was truly a day of mixed emotions lots of tears, with sadness, anger and thankfully laughter, yes laughter something that had been non-existent in ages.
We were told that the type of cancer that Tony had, that following treatment he would have a 95% success rate of surviving. With such a high percentage everyone was filled with optimism that he could beat this.
We were given a choice in treatment, we could go down the tried and tested way which would be 6 months of chemotherapy, or we could elect to go into a medical trial scheme which basically meant that we would be randomly selected for various other types of treatment all involving chemotherapy.
This we were told would hopefully have the same outcome but would help new protocols improve.
It was not an easy decision at all to make and as Tony was nearly 16 I felt it only fair that his feelings should be taken into consideration and that it should be a joint decision.
Although I was not completely happy we decided to elect for the Medical Trial, Tony was adamant that he wanted to help other children…
The treatment that was randomly selected was a 3 month course with stronger drugs. We had been told that some of side effects of the chemotherapy would be hair loss and sadly probably leave him infertile.
It made me mad that all the consultant seemed to be worried about was the infertile side of things and was insistent on him providing a sperm sample for storage for the future. He made a strong case for Tony’s future by saying that he would be glad that he had done it when he got older. Although I could see the logic in this I was just desperate to get the treatment started, but until he had provided his sample, chemotherapy would have to wait.

So Tony decided that as he was going to lose his hair anyway he would have it shaved off now! I couldn’t believe what I was hearing, here was my boy with his ‘curtain’ hairstyle stuck to his head with hair gel, asking to have it all shaved.
The Clic social worker lent us a camcorder to record the event and one of the male nurses called Richard came in on his day off and did the business!
Some of the conversation was x rated but we were all crying with laughter as we were told what to expect at the ‘sperm’ hospital.
So off came the locks and underneath emerged a young man, so very, very handsome. His eyelashes were so long that the young nurses were actually swooning over him. Gone was my little boy in one head shave , here I was honoured by being given the chance to see the man that he was growing into.

Oh God Tony I miss you so much darling…
Sorry readers I’ll have to stop for a break here but please come back..

Written by Mum

14. The Chemotherapy starts ...

The following few days there was a lot of improvement in how Tony felt as he was virtually pain free due to the morphine. This obviously helped a lot with his general mood as well, and he had the attitude of 'Hurry up and get on with what needs to be done, I want to get out of here'

Laurrie had stayed in Bristol with me, and David returned back home to work. The days were spent trying to keep Tony entertained which was really difficult as at 15 all he was really interested in was music, cars and girls... Oh and his hair! The fashion at that time was a centre parting with his hair draped either side like curtains, then, to hold in place a ton of hair gel was applied ...and they say women are vain !

All of us were missing James which was really hard as I had been unable to explain to him what was happening over the telephone, and I hadn't yet been able to see him since his brother was admitted to hospital. More to the point he had not been able to see us and was probably feeling VERY un-setlled and insecure.To make matters worse we had a message from Social Services in respect of the tape and drawings that were provided before we went to Bristol, still didn't have enough evidence for them to re-visit him!

This was a real kick in the teeth as I was convinced that this would have been the 'proof' needed, but no I was told that I had asked James too many 'leading' questions. So there we were back to square one , James living with his father with who knows what going on and Tony fighting for his life. But still Mum had to keep smiling for the sake of the children. What message would they read if I couldn't hold it all together?

David came back up to stay the night with us at Clic House and while at the hospital he wrote the following in my little black book:

I (David) arrived at 5.10p.m to find Tony with Mum, he seems relaxed and looks like the Tony I know. I watched him make his way to the toilet with his drips in tow and it made me realise exactly what he has gone through. We watched a video >

13. A Summary Of My Past

This post is a summary of my past to give you all a little insight into my background. It will also enforce in me the reasons why I am writing this.
As I have said in previous posts I am not an author I am just an ordinary Mum and therefore my writing maybe a little confusing for some. It is a roller coaster ride for me, as my life has been. I hope you will stay for the duration as it is my aim to keep my son’s spirit alive ….

At the age of 18 I left my parents home to start being independent, my parents and 4 sisters were not happy about this and all refused to talk to me for several months. For the next 3 years I became rebellious and a party animal, completely lost and really only ever wanting to settle down with Mr. Right and have unconditional love.
I then met my first husband who never met the approval of my parents , they saw what I couldn’t and so when we married all my family apart from one sister refused to attend. I went to bed that evening and cried myself to sleep knowing that I had made a huge mistake , but as I had been brought up to believe that marriage was for ever I knew I had to make a go of it.

I went through my first pregnancy with no contact from my family , until at 31 weeks I was rushed into hospital with pre-eclampsia. My parents then made contact and my daughter was induced at 36 weeks weighing just 3lbs and 5oz.
My husband by now had shown his true colours, I was married to a dirty, lazy , compulsive liar and hypochondriac.
In the first year of my daughters life we moved 3 times , the last being to a hostel for the homeless. Whilst there she stopped breathing and was rushed to hospital with what turned out to be whooping cough.

My marriage was unbearable but I was not strong enough to admit defeat and instead became pregnant with Tony thinking this would help the marriage. Again through this pregnancy I fell out with my parents over my husband, and once again I had no support from the family. They never saw Tony until he was 9 months old.

In 1983 I was just rebuilding my relationship with my parents when my mother was diagnosed with breast cancer . At the same time, my husband decided to convince himself that he was dying and forced himself to be sick every evening , I was unable to get any help for him and was told by our doctor to go and see a priest !This was a real strain on our relationship as he was trying to 'compete' against my mother.

Just before my daughters 4th birthday she was rushed to hospital, as she woke one night unable to stand or walk due to pain in her legs. Following 3 weeks of tests and an exploratory operation it turned out that she had an infection in the bone, a week of antibiotics and she was fine.However during this time she was in traction and X-Rays showed a shadow which we obviously feared the worse.

After years of mental abuse my marriage eventually broke down, a very upsetting couple of years ensued with me having to obtain a court injunction to keep him away as he threatened to kill us all. He eventually stopped all contact with us when he failed to turn up for a court hearing where it was ordered that he could only see the children under supervision.

I then met and married a soldier but sadly as he was away for the majority of our time together we both led very separate lives and the marriage only lasted for 3 years.

I then met James father and shortly after meeting, my mother lost her battle against the cancer. During the years following my divorce from my first marriage my mother and I had become incredibly close and I took her death very bad.
She died in the July and only weeks later my father announced that he had met someone else who he planned to marry. This was devastating for me and I could not forgive him for what I felt was betrayal towards my Mum. He had not even interned her ashes and had moved in with another woman. I could not attend their wedding and went to the cemetery instead.
Feeling very vulnerable after Mums death and my fathers marriage I planned to have James who was born the following December ,and we married the following year to give the children some sense of security.

The following years were very unhappy, after James was born my husband divided the family in two by making it obvious that he loved James more than Laurrie and Tony. As they got older so it became more noticeable to the point that he virtually ignored them and only ever gave one word answers if they tried to speak to him. I had started a business during this time and he insisted on giving up his job to help me, even though I was against the idea.
His role in the venture was to do the accounts, but unbeknown to me he never had control of the situation and we ended up losing not only the business but our house as well as we were forced into bankruptcy.
We were moved into rented accommodation and I secured a really good job in sales as he said he was ‘not able’ to work. I therefore became the breadwinner and he became ‘house husband’ not through choice but necessity.
What transpired was that he was only looking after James and leaving the elder 2 to fend for themselves.
I eventually decided that my children HAD to come first and that this family divide was not healthy for any of them. We were at a point where he wasn’t speaking to me either and so I told him I wanted to end the marriage.

This was when the real nightmare began and where I begin my blog... In Memory Of Tony……………………….

12. Another Trip To The Theatre

We were sharing the house provided by Clic with a family from Greece, their son had been in Bristol Children’s Hospital for months with a brain tumour.
They had come over to the UK as a last resort, it must have been awfully hard for them as they had left a young daughter behind and the Mum never spoke any English at all. Most of the time she stayed at the house cleaning, that was her way of dealing with things.

It was only a week until Christmas but none of us were in the mood for celebrating, how difficult that was when you are in a hospital ward full of children!
They are so resilient it made me ashamed of myself for feeling despondent. So many were there with very serious illnesses, Cancer, Organ transplants, Cystic fibrosis just to name a few. And yet very rarely did you see a child complain or even cry , they put us adults to shame.

So many emotions were flying around, everyone was afraid and didn’t know what to say in case they upset you.
Here we were just Laurrie, Tony and myself in a strange City 125 miles from home.
David had gone back as he still had his job to hold down and the cats to look after.
Christmas was now on the back burner, but how do you explain that to your 5 year old estranged son ?

I was so torn how could I give my 3 beautiful children all this support without falling apart?
How could I tell them that everything was going to be OK when I wasn’t sure it would?
I was missing James so badly he should have been with us, there was plenty of room in the house that had been provided. His bastard father will one day pay for what he has done to my family. Could he not see that these siblings should be together, he knew in his heart that the only reason he ‘snatched’ James was for his own gratification and that’s what scares the life out of me….
I hate being a grown up, nobody told me I was going to have this much hurt in my life, what have I done to deserve this…..more to the point what have my children done?

*Tony went to theatre the following morning to have the line in his neck removed and a new one put in his chest (Hickman line).
Whilst he was under the anaesthetic he had the catheter removed and a lumber punch was performed, this was the first stage of treatment which was known to us as the COP.
From now on as part of the treatment he was to have steroids every day. When he returned from theatre he also had a line in his hand which was where they were administering morphine.
Generally although VERY grumpy he appears to have accepted this awful situation and is dealing with it as I thought he would with a positive mental attitude.

Tony you will never know much I love you and am proud of you xxx *

* Extracts taken from the ‘little black book’.

11. My Little Black Book

Over that long weekend I bought a little black book so that I could write all our feelings and information in, this book I entitled ‘THE ROAD TO RECOVERY’.
It was to be well used over the following 8 months and this is where I am drawing all my memories from. My reason for doing this now is as an attempt to ‘heal’ myself as I am still stuck in the past, unable to move on.
It is not an easy task that I have set myself as every time I open the book all the memories flood back as though it were yesterday, but I know that I have to do this to try and retain my sanity.

The following, is an extract that Tony’s sister Laurrie wrote, at the time she was only 17 herself and was also very frightened. The only experience that she had of cancer was her Nan dying of it 6 years before.
She was also studying for her GCSE’s and was , like us still worrying about her baby brother as well. Laurrie and Tony had the typical brother/sister relationship , they argued like cat and dog but as soon as the chips were down they stuck together like glue. Here’s what she wrote …

Mr. Spicer arrived at 9 a.m to see Tony and pre-warn him that he may have cancer, Tony was very brave and didn’t cry instead he asked a lot of sensible questions and spent most of the day thinking.
Mr. Spicer was due to visit at 6 p.m and was to be accompanied by a French Consultant called Eric, however, this was not the case and Mr. Spicer arrived on his own at 6.30 p.m.
He briefly explained to Tony that he had B Cell Lymphoma , and that he would need 6 months of chemotherapy , after Mr. Spicer left Eric arrived and had a private word with Mum and David.
As this was happening Tony found a lump under his right arm of which he was concerned about.
Eric and parents returned to explain to Tony the plans for chemotherapy.
Initially Tony explained his fears to Eric who dismissed them and carried on explaining the treatment plan, which confused and frightened Tony.
Eric said that Tony’s treatment would in fact take three and a half months, different to what Mr. Spicer had said. Eric told Tony that it would be advisable to make a sperm sample for storage as treatment could leave him infertile, at this point Tony was still upset and scared about the lump he had found and Eric left leaving him more confused to think things over.
Written by Laurrie

10. The Long Weekend.

Opposite the hospital was a public phone box which faced directly to where my darling son lay fighting for his life …this was where I made my longed for calls to James. It was on this day that, when I phoned, he said that his Dad wanted to speak to me ,I was totally not prepared. The sound of his voice filled me with anger as he asked how Tony was ……
My reply was ,and I quote “How dare you, you the scum of the earth, after all what you have done, all the lies that you have said in court about my family , you have the nerve to ask me about MY son that you wanted nothing to do with !!!”
No answer was the stern reply …
James came back on the phone and I had to immediately switch to being Mum to my estranged 5 year old….. the world being a happy place…. nothing wrong ….cool, calm and collected … inside wanting to scream , cry, shout ,murder… and all the while looking at the hospital, where I had to go back and again hide all these emotions and stay strong .
Mums have to be strong ,after all it’s Mum who holds the family together , don’t they?

Tony’s recovery is slow but good, and he’s a model patient polite and very brave. The pain is now under control and the tube is removed from his nose.
A few problems arose over the weekend, unfortunately the catheter had leaked and had to be re-fitted which really upset him. Then in the evening the epidural leaked because the dosage was so high and morphine had to be given through his Hickman Line as the epidural drug was not getting through.
He was allowed to sit in a chair for 15 minutes and encouraged to exercise his lungs by deep breathing.

The waiting for the final results on Monday was taking it’s toll on all of us , but Tony in particular was very irritable , who could blame him…
David had brought Laurrie up to stay in the house with us that Clic had provided, the only person missing from my little family was James. I so missed him as did the others. There was that un-spoken fear as well in the back of all our minds ,for Tony and James.

9. A Time To Celebrate ?

After a very restless night Tony was eventually made comfortable as the dosage for the epidural was increased making him virtually pain free.
Unfortunately though he was now having trouble with ‘weeing’ and had to have a catheter fitted. Not very nice for a 15 year old to endure, especially when all that surrounded him and the other patients was a curtain. Still he was brave and it also helped him tremendously.

We were introduced to the Social Worker for Clic (Cancer and leukaemia in children) and were told that as he had now been officially diagnosed they could help us with things like accommodation.
To us this was a huge relief as the hospital was more than 125 miles from home and there was no way I intended to leave him there on his own.

Anyone who has read my previous posts will know that as this was all going on I was also deeply concerned for the welfare of my youngest son who was living with his father.
Just days before Tony was taken ill my youngest had drawn a picture and told me things that sent alarm bells ringing once again that all was not as it should be at home.
I had taped our conversation and taken it along with the drawing to our local Social Services Welfare Officer as well as a transcript of the conversation that they had requested.(This was the first time we had managed to get a recording )
I was told that they would look into it for me, but sadly Tony was taken ill and we were whisked off to Bristol before I had a chance to follow it through.
I was now able to relay these concerns to the Clic Social Worker who promised to find out what action had been taken….another relief (or so I thought)

The day seemed to get better, Tony was able to sleep most of it away, and was responding really well to the treatment.
Then the best news of all , our consultant came back from London to tell us personally that early indication showed that the Cancer he had was the one that could be treated !!
It felt like Christmas had arrived 2 weeks early….all the rest of my family were busy preparing for celebrations with their children and here I was celebrating that my eldest son had a ‘good cancer’ and my youngest was being investigated by Social Services for exhibiting unusual sexualised behaviour at the age of 5.
What did I have to complain about???
I was so torn between my boys and my daughter, I had Tony possibly dying in front of me, my youngest living with his father whom I was only allow to speak to when his father dictated I could ,and who I was worried sick about, and my daughter, at home, aged 17 who was worrying about us all.
How I missed my Mum so much… sadly she had died from breast cancer 8 years before at the age or 57 , and my Dad ?... living in Spain with his new wife who he married 4 months after Mum had died.(Perhaps a little bit of resentment there do you think ?)

8. Biopsy Day

He’s in so much pain today, an intravenous drip of morphine was given but had little effect .
They prepare for surgery but as he had a bad night he is really tired, scared and very irritable.
To have to leave him at the theatre door was such a wrench, I’m so frightened but have to hold it together after all we still haven’t been told officially…maybe they’ve got it wrong….maybe Tony was right ,it was just too many cola cubes ! Now your being stupid Sharon.
David and I went for a walk whilst he was in theatre, I hoped he would be in there for a while as that would probably mean that they could take this disease out of him now.
Sadly an hour later and he was being taken to recovery, nobody needed to say anything to me I knew in my heart that this was not going to be good news.
We were told that they had found several lumps, one was attached to the liver and another was by the bowel and could not be surgically removed.
It was then that they hit us with it…they were sure that he had one of two types of cancer, one that would not respond to treatment which would mean he would only have weeks to live. Or he could have the ‘good ‘ one which responds well to treatment.
So there we had it , the dreaded word, CANCER. He was all of 15 bloody years of age, why, why why?
Only weeks to live ? No this cannot be right …he’s my baby, did I scream cry do you know I cant remember, and that saddens me because I want to remember every last detail.
What I do remember (and later feeling guilty about it) was that when the surgeon came in to see us he was carrying a little white bag , presumably the tools of his trade. But in my state of shock, I expected him to open the bag and show us the samples that they had taken!! I laugh at my stupidity now but it took quite a while before I admitted it to anyone.
I also told the surgeon that I knew this was going to happen as I had been for-warned several years ago by a clairvoyant (That’s for another day). He must have thought he had a raving lunatic on his hands.
Now we had to play the waiting game , the samples were to be taken to London for testing to see which type of cancer he had the ‘good’ or the ‘bad’. How can you have a ‘good’ cancer ? even the name itself sends shivers down your back.
He’s brought back from theatre to Ward 13 to the bed with just enough room for the little plastic chair ,he had a tube in his nose to stop him vomiting, an epidural tube in his back to numb his stomach and a line in his neck for drugs to be administered.
David drove the 125 miles back home to look after Laurrie and I stayed with Tony for what was to be one of the worst nights of my life.
He was in so much pain and I couldn’t do a thing, he kept waking and crying he was just so frightened. At one stage he asked me ‘to let him go’ I remember the screaming in my head asking the so called ‘God’ to help me.
I was quite vicious to the nurse in the middle of the night as it was obvious that the epidural was not working and after several attempts of paging a doctor I was told that he had gone home and they were waiting for him to come back. Apparently it was only him that was authorised to give the medication. After what seemed an eternity I shouted to her to give me the drug and I would administer it my f******* self! Not the way that a respectable mother should behave you might say, but to be honest I’d have done anything to be able to relieve the pain for him and the fact that all I did was scream and shout a little abuse I suppose wasn’t too bad.
Well we got through the night, both exhausted, tomorrow another waiting day.

Written by: Mum

7. The Long Journey To Recovery ?

On arrival at the hospital Tony was just coming out of the bathroom, I can see him in my mind now. His skin was a ghastly mix of yellow and grey, he was in horrendous pain and tried his best to look the brave young man that he was.
While waiting for the ambulance to take us to Bristol he had to make several trips to the bathroom to vomit. This ‘disease’ was taking a grip so fast it was frightening, but as Mum I had to stay calm and focussed for him so as not to frighten him anymore than he must have already be feeling.

We left Plymouth at 8.45 am for the long journey to Bristol Children’s Hospital.
On our arrival instead of a large ‘State of the Art’ hospital that I was expecting it was an old building and we were escorted to Ward 13.

Not a room on his own as he had in Plymouth but a Ward full of extremely ill children, beside each bed there was just enough room for 1 plastic little chair.
Hey what did the surroundings matter ? This hospital and these fabulous people were going to make him better …
We were bombarded with what seemed like 100’s of questions and were then introduced to the specialist Mr.Spicer.

Again we were given a glimmer of hope as he told us that his first impressions were that it was a cyst as Plymouth had suspected and possibly some sort of infection.
We were then shuttled off for Scans, Barium Meals and X-Rays. By now the pain was so intense that Tony had great difficulty in even getting from a wheelchair to the bed .

Later that day we were told that the X-Rays had confirmed that there were 2 lumps, one in the liver and the other in the bowel. An operation for a Biopsy was booked for the following day and I had to sign a consent form for a biopsy, lumber punch and epidural.
David arrived later in the day and we decided that I would return home as there was nowhere for me to sleep ‘apart from the plastic chair’. It was agreed that I should leave him to rest as much as possible as tomorrow was going to be a big day.

This decision broke my heart, I didn’t want to leave him in pain on his own but I was out-numbered , in a daze. So many emotions even now they are so real… God who said putting this in writing would be therapeutic, sorry readers will have to continue another day.

6. The Beginning Of The End

Tuesday 9th December
After another sleepless night , I returned to the hospital to find Tony in a lot more pain than he had been since this all started.
We were told by the doctor that they were now sure that it was not Hepatitis but they still could not give a diagnosis at this stage. So the day dragged on until he was due to have his CT Scan at 3.30p.m. by which time the pain was getting worse by the hour.
Since being admitted to hospital he was kept in isolation and visitors were being restricted in case whatever he had was contagious. All we wanted now was for someone to tell us what was going on .
At around 8 in the evening Mr.Ward the consultant came to see us carrying the films from the CT Scan. At last we were about to get some answers…..
He explained that the scan took pictures of ‘slices’ of his stomach, and it was through this that they were able to determine that there was a large area that was diseased. He held the film up to point out the area, I expected to see a small patch of darkness but to my horror he pointed to virtually the whole area and said that was it. Tony immediately asked if it was cancer which really shocked me as I hadn’t realised that he had even considered that there was a possibility ! However, an even bigger shock was when Mr.Ward said ’yes’ he thought it was …
I couldn’t take it all in, my 15 year old son who only this afternoon we suspected had a cyst on his liver was now being told it was cancer. My son who had never had a serious illness in his life , there must be a mistake. Always the joker Tony asked if it was possible that the shadow could have been from him eating too many cola cubes!
Sadly , Mr.Ward assured him there was no possibility and told us that we had to go to Bristol Children’s Hospital (125 miles away) the following day as they were more specialised in this area.
Our lives were about to be torn apart again, why us what had we done ? Was this down to me , was I being punished for something ? Had I been a bad Mum ? Hundreds of questions…No answers , the only answers that could be given were in my head and now I was beginning to blame myself .

Written By Mum

5. How Could This Be Happening ?

I returned to the hospital on the Monday morning to find that they had sent Tony for an Ultra Sound Scan before I arrived, I was a little upset that this had taken place before I arrived but this is hospital and I had not yet become accustomed to the fact that they work 24/7.

Tony told me that the scan had shown up a shadow on his liver, that’s when the alarm bells rang loud and clear !All through the day Doctors and Nurses were coming and going and yet nobody could not , or would not , give us any more information.Test results from the blood were all coming back negative and although the pain was getting worse for him it was being kept under control.

A Doctor from the Royal Navy who was working in the hospital came and told us that he thought that it was a cyst pushing on his liver and this was causing the jaundice.We clung on to this hope .... A CT Scan was booked for the following day for the whole of his body, perhaps then we would know for sure what the problem was.