He started suffering from shoulder pain early 1999. He played rugby at school so eventually when it seemed to be getting worse our GP referred him for physiotherapy. It was the year of the really big eclipse and the whole of South Devon was gridlocked, so he missed his August appointment. He didn't get another one until September.
When he took off his shirt, even I could see that his shoulder was misshapen.
The therapist referred him to our local South Hams hospital for X-rays. The radiographer immediately referred him to Derriford in Plymouth where he was diagnosed on 1st October.
Over the three years he had Chemotherapy, Radiotherapy and Stem Cell Therapy at Derriford in Plymouth. He had the bone in his upper arm removed and replaced by a titanium rod at The Royal Orthopaedic Hospital in Birmingham. The doctors were disappointed in the amount of necrosis even after the stem cell therapy. They were wonderful. Paul Ward was his consultant at Derriford and advised that as he was still just under 16 he would be treated at the Paediatric Department on Level 12. Lured by the idea of better computer games (this was before everyone had laptops or Wi-Fi) Hugh agreed and he stayed on Level 12 for his entire time of treatment. Paul Ward consulted with Professor Mike Stevens at Bristol and Professor Craft in Newcastle. Whenever they attended conferences, they would consult other professionals working in the field. We had the utmost faith in them and still believe that, at the time, he was getting the best possible care.
At one point I was in contact with other parents in the USA, and I took comfort in that, whilst research was going on all over the world, Hugh was still in the best place.
Towards the end, having tried one particularly vicious treatment, he was put onto palliative care and I was given a big red pen by the head radiographer so that I could mark where Hugh was having pain and bring him into the department at the end of the day where staff would stay late to zap him. I cannot thank them enough.
There were bad times of course. Set backs like when we thought he was properly in remission and had booked to visit old friends in Florida but the night before the flight he complained of a really bad headache. His consultant, Paul, told us to take him to Taunton hospital, that being the nearest to where we were staying. I think he had an MRI scan and the bad news was that the cancer had moved to his skull. So, no holiday and the horrible truth could no longer be ignored. So, yes there were bad times, but Hugh was a great one for living in denial so we had to too, and mainly we remember the good times.
Hugh had always been a very thoughtful, pragmatic child and continued to be so, even as a teenager, during his horrible illness. He was very dyslexic and, once diagnosed, worked hard on strategies. He took the same approach to his illness.
We were lucky that unless he was neutropenic we could keep him at home. We live 25 miles from the hospital and the wonderful CLIC Sargent (now Young Lives V Cancer) nurses would come out to us to take bloods etc. He had good friends and was good company. When well enough he went to school and to all the parties. The school and the exams board were very good and sent duplicate GCSE papers to the hospital and to the school and arranged that he'd have an invigilator with him if he was in hospital.
He went with his friends at the end of his A level year to Newquay and stayed in a caravan, his Oramorph in the fridge jealously guarded by his friends.
The mother of a friend of his brought him home late one night towards the end, and in the car, she reported to me that he said, 'I've been very lucky. There was an old woman on the radio today who said she'd had a horrible life, and I've had a happy one with good friends and people who love me'. You can only imagine how we felt when she told us. He made it very easy for us.
He had his 19th birthday at the beginning of October and said he'd like a big party for Guy Fawkes night. We live in the country with a fair bit of space, so we started making preparations and he invited all his friends, some of whom by then were in their first year of University. 5 days before the party he fell into a coma and was on huge amounts of morphine. His CLIC nurse Petra was nearly living with us. We had no idea but Marie Curie, our GP and Petra had had a meeting towards the end, and Petra and a Marie Curie nurse had been put on standby. There was no way of contacting all his friends and cancelling the party, so we consulted with his doctors and nurses, and they all said to go ahead. Another nurse friend held his pulse as the fireworks banged and flashed outside his window. She said that there was no change apart from when there were oohs and aahhs of appreciation.
His friends came in twos or threes to his room and spoke to him, and said their goodbyes in their own ways.
One girl, Vikki, not a girlfriend but a good friend, said she'd be over in the morning. No one thought he'd last the night, but he was comfortable. The next day I caught her and asked her to say that she wouldn't be back until Christmas as she had to go back to University. She held his hand, spoke to him briefly, said 'Goodbye' and left. I comforted her outside and then Petra called us all up. He died peacefully at 11 o'clock on Remembrance Sunday, which that year was the 10th November. Such strong young people. They all came to the crematorium where he was played out by his clarinet teacher playing jazz saxophone.
Looking back, mainly Hugh was constrained from doing many of the normal things that 16–19-year-olds might be expected to do. But he did what he could. His older brother and sister came home and found work locally. It was never said why they came back and was never discussed but it was definitely the right thing to do. In fact, the first winter two of them went to New Zealand, Australia and Thailand together for three months, a trip which had been planned for some time and we persuaded them that nothing was going to happen in a hurry and that Hugh would hate for them not to go. His sister, Rachael, wrote long letters (before the time of emails and mobile phones) and sent photos. We followed them on a map. He became a good one-armed cook and learnt to crawl his fingers out to play pool because the upper muscle didn't work. And he played his clarinet.
The Easter before he died his cousins were going to Canada to visit their sister who was having a year in Toronto, and they invited him along too. Paul Ward contacted the hospital in Toronto so that they were aware of Hugh's condition in case anything happened while we were there. My husband and I said we'd better go too in case anything happened and that meant he could have a rest during the day so he could stay up late (playing pool) with the others. He was about to get a provisional driving license when the cancer moved to his skull so was not allowed to learn to drive. There's an off-road track near our house so quite scarily we taught him to drive there. And three weeks before he died one of the doctors had a connection with his favourite band, Cold Play and got him tickets to go when they came to Plymouth. He could have gone to the after-gig party but chose not to, going outside to buy a very unsuitable tee shirt from someone on the pavement outside the hall.
My advice to others would be do what the doctors say but otherwise live in denial. That way you'll keep all your friends. Don't look up the internet too much - it's very depressing and often wrong or out of date.
Take any opportunities given to you and you can always duck out if you're not well enough on the day. People will understand.