Neil was 17 and a strapping rugby player. Six weeks later he died from a rare cancer...
Ulster Rugby president John Robinson is still mourning his son, while player Chris Henry lost his dad to cancer. They tell Stephanie Bell why the team's chosen charity means so much.
Published 18/09/2013 | 14:30
Two of Ulster Rugby's biggest names today open their hearts to share for the first time their personal pain at losing someone very dear to cancer. Ulster Rugby president John Robinson talks movingly about how his rugby-playing teenage son Neil died just six weeks after first falling ill in 1998. And Ulster and Ireland player, Chris Henry, is still coming to terms with the loss of his dad, William, to bowel cancer three years ago.
The poignant stories of a dad who lost a son and a son who lost a dad bring home just how important it is for people to continue to support cancer research. Their stories mark the launch by Ulster Rugby of a new partnership with Cancer Research UK.
Both John and Chris have welcomed the sporting body joining forces with the charity for a year, supporting it alongside the RIFU Charitable Trust. Ulster Rugby will dedicate the next 12 months to helping promote and support the lifesaving work that Cancer Research does in Northern Ireland.
Four match-day collections will be held at Ravenhill and four fundraising events will be staged over the course of the year. Members of the Ulster squad, including captain Johann Muller, saw some of the work that the charity funds recently when they toured the laboratories at the Centre for Cancer Research and Cell Biology at Queen's University, Belfast.
The players met the medical research staff and were able to hear first-hand about the groundbreaking research that is being carried out. Commenting on Ulster Rugby's partnership with Cancer Research UK, Johann Muller says: "We would all like to kick cancer into touch and therefore I am delighted that we are partnering with Cancer Research UK and joining with the charity in the fight against this terrible disease.
"I know that all the players, staff and fans of Ulster Rugby will get behind the partnership and that together we will make a significant contribution to this great cause."
Cancer Research UK regional fundraising manager Ryan McClintock says: "We are very excited about the prospect of working with Ulster Rugby and are delighted to be their partner for 2013-14."
'It was an absolute nightmare at the time... and it still is'
Ulster Rugby president John Robinson (58) lost his son Neil to Rhabdomyosarcoma, a rare cancer of the muscle when he was 17. John also works as director of services in Methodist College in Belfast. He lives in Saintfield and is married to Lynne (56), a secretary at Queen's University, and they have a daughter Jan (29), who is a trainee GP. John says:
Neil had just done his AS levels in Methody and was in the 1st XV rugby squad. He was this great big 6ft 4ins strapping fella.
At the start of October 1998 he started to have some flu-like symptoms. When he wasn't any better after a week we took him to our GP who did some blood tests. He continued to deteriorate, was very tired, had a fever and was a bit jaundiced and so we decided to take him to A&E at Belfast City Hospital.
They did tests which showed his blood platelets were low and they admitted him to a haematology ward.
It all turned into a nightmare after that. After two to three days they thought he had acute leukaemia. We had a bad situation when he bled badly and we nearly lost him.
They were preparing to treat him for leukaemia when they discovered he had Rhabdomyosacroma which is a rare cancer of the muscle.
He deteriorated again very quickly and was admitted to intensive care. He had to have emergency surgery because he was having real breathing problems as his lung was collapsing.
He was conscious but then took another turn for the worse and we were sleeping with him night and day in a side ward in the hospital.
After about two or three weeks we were told there was nothing that could be done for him and he died on November 11, six weeks after he went into hospital.
When we were told it was leukaemia we knew the prognosis was poor but we knew people survived leukaemia.
Being told it was rhabdomyosacroma was much harder to deal with. We were told it was treatable, although in hindsight no one ever told us it was curable.
I couldn't speak highly enough of the medical staff who looked after him during that time. He had many transfusions of platelets and surgery.
It was an incredibly difficult time. It was all very quick and there was nothing we could do about it.
It was an absolute nightmare at the time and still is.
We are all very different in how we deal with it. I lost myself in work and other activities.
I always worked long hours but I worked even longer hours after that. I renewed my interest in rugby and joined Ulster Rugby as honorary treasurer 10 years ago and threw myself into that.
I came to realise that people don't want to see too much misery about them and if you are standing about looking miserable people will avoid you.
We had to move on for Jan as well. She was just 15 and was greatly affected by Neil's loss. She lost her big brother who to her was more or less invincible and it was hard on her and still is.
It was also very difficult for Lynne and she coped very much like I did by throwing herself into work. We both reappraised life and realised we had to get on with it.
Lynne has been chair of the Saintfield Cancer Research committee for many years and has worked hard with it.
We all do miss Neil. You can never do anything about it. He was great. I couldn't say a bad word about him. He loved rugby and sport and loved his friends and was very sociable and liked by all his friends.
You can never put it behind you, you just adjust and move on. It's always there. It's a person who you were very close to and who can never be replaced in any shape or form. You just have to do the best you can to cope with it and we are blessed because we have good friends and people in rugby and beyond who have been a great support and that's how you cope with it. Lots of people in this world have lost children; you just have to carry on.
I and my family were delighted that the Ulster Rugby committee decided to partner with Cancer Research. Obviously it is a cause close to our hearts.
I don't think there is a family in Northern Ireland that hasn't been touched by cancer.
It is good to be supporting a charity that is helping to fight this disease which touches so many and rugby is a community game, so it is very appropriate that we are supporting Cancer Research."
'My dad was just a typical man and thought that he would be OK'
Ulster and Ireland rugby star Chris Henry (28) lost his father William (59) to bowel cancer on May 8, 2010 just months after his diagnosis. Chris, whose mum is Denise, has two brothers, John (31) and Daniel (21). He says:
My dad knew he had cancer for a few weeks but as it was close to Christmas he decided to wait until Boxing Day to tell me and my two brothers.
He told us he had been given just one to two years to live. It was a terrible shock – it hits you like a ton of bricks. It is a bit surreal when you first hear it. Dad was very strong-willed and he assured us he would fight it.
Dad was an air traffic controller who played rugby all his life, which is why I got into it. He always kept healthy and enjoyed life and was the life and soul of the party.
He wasn't a health freak but he looked after himself. He was my best friend to be honest.
Dad started treatment which had a risk of stroke and not long into it, he took a stroke. His last couple of weeks was very tough and he couldn't do anything for himself and was suffering. In the end the whole family felt relief that he wasn't suffering any more. But it's still hard.
My dad didn't get much time. Since then there seems to be this media campaign on bowel cancer warning people of the need to get checked out, which I think is great.
I had never heard much about bowel cancer before.
My dad was a typical man and probably thought he would be ok and had nothing to worry about.
Because he loved rugby, dad was my biggest fan. I got my first Irish cap four weeks after he passed away in Australia.
I think it was the best for me that I did go to Australia and got back to work and mum came out to Brisbane to watch, which was very special.
It was sad that dad wasn't able to see me in a green jersey and although I was lucky to have him for 25 years, it was nowhere near enough. He was proud of all of us.
I was delighted when I heard that Ulster Rugby was partnering Cancer Research. Since cancer came into my family I have heard of so many friends who have had it touch theirs.
You think it is never going to happen to you but it is so common. I can't get my head around John Robinson's loss. You are supposed to bury your parents and for John to lose a son is just heartbreaking.
This partnership with Cancer Research can only benefit the people of Northern Ireland."
Ground-breaking research, but cancer charity still needs your support
* Belfast is part of a network of Cancer Research UK centres across the UK, bringing together world class doctors, scientists and nurses, who, by sharing their knowledge and expertise aim to bring discoveries made in the lab to the patient's bedside.
* Every hour someone in Northern Ireland is diagnosed with cancer.
* Cancer Research UK is the only charity to research all 200 forms of cancer, but receives no Government funding for its life-saving research – it relies entirely on public donations and fund-raising
* Cancer Research UK supports more than 40 researchers in Belfast, based at the Centre for Cancer Research & Cell Biology and the cancer centre at Belfast City Hospital.
* Professor Paddy Johnston is finding new ways to treat bowel cancer that has stopped responding to chemotherapy. Each year in Northern Ireland, over 1,000 people are diagnosed with this disease.
* Rhabdomyosarcoma is a cancer that starts in muscles and it is the most common type of soft tissue cancer in children.
* The disease is easier to treat if diagnosed at an early stage, but if it spreads or comes back again after treatment, the prognosis is worse
* Cancer Research UK is leading a clinical trial to find out whether adding a drug called temozolomide to existing chemotherapy could help treat recurrence of this type of cancer