• When my son was diagnosed with Leukaemia in 1999 at the age of 15 I was so upset I couldn’t say the word Leukaemia when I telephoned my mother late on the Friday night, after seeing the Consultant urgently the same day at Gloucester Hospital.  I rang and I said “He’s got…………..” and then silence, and I couldn’t say the word.  I said “He’s got…………..” several times, and then eventually after a long pause I got it out, and she burst into tears.
• Because it was the weekend, they couldn’t start his intensive treatment in Bristol until Monday, so we were sent home.  I was moving my mother that Saturday out of her flat in Frome, and she was going to live with us until an apartment she had bought was ready.  I drove to work and borrowed a van to move her furniture.  My other son was helping me.  The physical work was a relief because I was so angry I would have knocked down anything that stood in my way.  I drove very aggressively in the van, but no one said anything.  I think I went back to Frome twice that day, but I can’t really remember.
• Once the move was done I can remember sitting on the settee at home, and without uttering a sound, tears were streaming down my cheeks.
• We had to take my son to the Bristol Children’s hospital on Sunday evening, and went for a meal at Riverstation restaurant and I ordered Champagne, which lifted everyone’s spirits.
• The delay over the weekend nearly cost my son’s life, because his blood counts had become so low by Tuesday that his organs started to shut down and he was dying.  I had seen my Grandmother close to death, and now my son was lying as lifeless as she was, with a grey pallor to his skin and breathing shallowly as he lay unconscious.
• They gave him an emergency blood transfusion, and quite quickly the pink colour returned to his skin and he woke up and sat up in bed!
• I dashed back to work, and when I returned to the hospital next, my son was in the playroom of the children’s ward as he was too young for an adult ward, but also he was too old for a children’s ward.  (We still haven’t achieved a dedicated teenage cancer ward in Bristol, despite funding being in place for some time from The Teenage Cancer Trust, but I think we are nearly there now.)
• When I was able to see what my son was doing I was completely shocked.  It was the most terrifying and startling thing that I have ever witnessed in my life.  With the help of the play specialist, a 15 year old boy was sitting, quietly colouring in a paint-by-numbers picture such as a pre-school child would do.
• The play specialist took me to one side and calmly explained that it was therapy to help him get over the shock.  Unfortunately no help was given to us or his siblings to help get over the trauma, and this is a gaping hole in Cancer Services which needs to be filled urgently.
• My son never complained about getting Cancer.  Never felt sorry for himself, even when some of the treatment was very painful.  He was always very positive.  Another boy of similar age, who was diagnosed within a few days of my son, was often in the next bed to us in outpatients, as he had a similar treatment regime, but he wasn’t positive.  After general anaesthetics that were required to inject chemotherapy directly into the spinal cord, this teenager would be complaining, and he was sick because he had a drink before the anaesthetic, whereas my son hadn’t had anything at all and was smiling, relieved it was all over.  The young boy died quite early on in treatment, and the next bed was usually empty as we waited to go into theatre.
• The only thing my son ever asked me was when we were alone together, near to the beginning of treatment, and he said, “What is it like to die?”

Of course I had died several times, so I knew exactly what it was like, and I replied, “Oh its fine.  You just go to sleep and don’t wake up.  There’s no pain.” (Pink elephant!)  “Oh, that’s OK then.” He replied.  Throughout his treatment he never once grumbled, or questioned anything he was going through.  We did, however, whistle the tune to “The Great Escape” every time we left hospital after a procedure or course of chemotherapy.

• Whilst we were going through hell on the ward, we witnessed other parents going through much worse than us.  One mother’s child was so disabled by illness she had to be lifted by a machine in and out of bed.  She had had so many cannulas inserted into her that the doctors had no veins to get a needle into, and they struggled in vain to get one into her foot while she was suspended in mid-air in a hammock.  The doctors gave up, and I can vividly remember the red blood dripping from her foot onto the old, stained lino floor.  The dreadful suffering of this child had gone on for years.  The wife’s husband had long since abandoned her as she devoted her time and energy to help her sick daughter.
• This was the old Bristol Children’s Hospital, (which has now closed and they have built the new one called the Paul O’Gorman building).  When they dimmed the lights at night to allow the younger children to sleep, the mice would run up and down the dimly illuminated ward.  Racing around the blood spills and other fluids on the floor.
• In complete contrast, whilst all this was going on, a disused ward next door was being used by the BBC to film episodes of the drama “Casualty”.  We could peer through the door and watch some of the actors, including one of my favourites Claire Goose!
• My son would have to receive so much chemotherapy intravenously that his veins couldn’t cope, and therefore he was to have a Hickman line inserted into his chest with a tube going directly into his heart.  In children’s paediatrics this is referred to as a wiggly line or just “Mr.Wiggly”!  Terminology that also helps teenagers cope with an alarming procedure.  I’m sure the thought of having two wigglies was very amusing to him! 
• As we waited for him to come out of the theatre having had this fitted, the doctor came out and said, “Everything was fine, and it’s ready to use straight away!”  This puzzled us because we weren’t really sure how this was to be used, and the Doctor seemed to imply that we would be using it!  We were invited to go into the recovery room to see him.  When we walked in, he was still unconscious and a young nurse had his head cradled in her lap, and was gently stroking his hair while watching the monitors closely.  This extraordinary image of an NHS employee showing exceptional care, affection and dedication to her young patient is one that will never leave me.
• We were told by the Professor that one of the side effects of remission induction would be that he would lose his hair.  However the days went by and then weeks, and he still had his hair, and just when we thought he wouldn’t lose it he awoke one morning with clumps of hair on his pillow.  Over the next few days more and more clumps of hair fell out, and he had a very strange appearance.  He is a very good looking boy, and was always very proud of his appearance, so we decided it would be best to take it all off as he would look much better.  I shaved his head with an electric razor in the upstairs bathroom.  It was the most difficult thing I have ever done in my life.  One of our GP’s bought him a designer cap, and he always wore a hat until his hair grew back.
•  My son came close to death several times over the next few months as intensive chemotherapy killed every cell in his body many times over, before they infused an antidote to stop it killing him.  We went agonisingly through each one with him.
• On one such occasion I couldn’t stand it anymore, and had to leave the ward for a break.  As soon as you walked out of the front door of the hospital it was like walking into a different world.  I went into a pub on my own and had a pint, before I went back.
• My wife and I played team-tag, looking after him in hospital.  Usually only one of us at a time, so we could try and keep our jobs going.  Occasionally we both stayed together in the CLIC Sargent funded CLIC House near to the Bristol Children’s Hospital, where we would comfort each other.
• One night when it was my shift to look after him I was close to tears when I was saying goodnight, before walking back to the CLIC House.  He looked up at me and could see I was upset, and he said, “What’s the matter?  Why are you upset?”
• We longed for the end of treatment.  After three years the end of treatment did come, but he still was classed as in remission.  He wasn’t cured.  There will always be the likelihood that he could relapse, and he was more at risk of another type of Cancer being diagnosed.  Thus began Survivorship, and the Doctors talked in terms of 5 year survival and 10 year survival.  The longer the patient was free from Cancer, the better the prospects that he/she would stay in remission.  But the end that we had longed for never came.  However with other people losing their child, we were extremely lucky to still have ours.
• After the end of treatment secondary complications were diagnosed that were so completely unexpected, they were nearly as traumatising as the original illness.  In the future individual treatment plans will be developed based on a better understanding of residual disease that will allow modifications to treatment to minimise late effects following chemotherapy.
• I was, and still am traumatised by these events, and with time this has become less painful, but I think the trauma will always remain with me.
• I would like to thank the late Professor Tony Oakhill, CLIC Sargent and all the NHS staff who helped to save my son’s life.