Gaynor and Nigel, Rhodri's parents, share his story

It was May 2005 and Rhodri at nineteen years of age, started complaining of a pain in his groin. As an active sportsman we thought it was just another little injury that he had picked up whilst playing rugby/soccer or cricket.

He was just coming to the end of his 2nd year at UWIC university, Cardiff, where he was studying sociology and having a great time living the student life during the week, and coming home on weekends to play sport, see his girlfriend, and get his mum to do his washing. He was busy with end of year exams, etc, and went to see a physiotherapist about his 'groin injury'. As his pain worsened and a pronounced limp developed, our GP made a referral for Rhodri to see a sports injury consultant. At the end of June, whilst still waiting to see the consultant, Rhodri went to see an osteopath privately to see if he could offer any help. The osteopath knew immediately that something was very wrong and told Rhodri to go to A&E with a letter he had written about his concerns. An x-ray showed that Rhodri had a tumour on his pelvis and we were told he would need to go to Birmingham for a biopsy.

We were absolutely devastated when the consultant at our local hospital told us gently that Rhodri was probably terminally ill. The thought that we were going to lose our younger son was unbearable. At Birmingham it was confirmed that he had osteosarcoma in his pelvis and it was inoperable, and then his nightmare journey through osteosarcoma began. Rhodri never walked again after the biopsy and he was always in such terrible pain. He was then transferred to Velindre Hospital, Cardiff, a specialist cancer hospital about an hour's drive away from our home in Swansea. He was happy to return to Wales, as a Welsh speaker he loved the language and all things Welsh.

Rhodri's life had been turned upside down, and although he was bedridden, scared, and in pain, he never complained or moaned, his wonderful sense of humour still shone through but he wanted treatment quickly so that he could get on with his life. Velindre hospital is a wonderful place and they weren't prepared to give up on this young man without a fight, so although palliative care had been recommended, they said they would try to get Rhod through surgery. We were thrilled at being given hope again. Rhodri wanted to live so badly. We knew he needed a very aggressive chemotherapy regime but nothing prepared us for the damage it did. We honestly believed that the chemotherapy would kill Rhodri before the cancer did. It was absolutely horrendous, but brave Rhod wanted more, he was prepared to go on and on and on until he was cured. He went into hospital in June and never came home until the middle of October. He was so desperately ill from the chemo that nearly killed him. After his first visit home for four days, he was told on his return to hospital that the chemotherapy was not working and the cancer was spreading. He was told he was terminal and offered palliative care. He was devastated. He wanted treatment that could cure him and he wanted it now! There was no way he was giving up without a fight. As a close family, from the start of his illness we had taken it in turns to stay day and night with Rhodri so that he was never left to fight his battle alone. Rhod's quest for life was so strong that we couldn't just sit back and let him die without trying everything.

In desperation, we made contact with a renowned paediatric bone cancer specialist at the M.D. Anderson Cancer Centre in Texas who was fantastic. He had a positive approach and recommended different chemotherapy drugs that were not so aggressive but equally effective. There were so many different drugs and clinical trials available in the USA which were not on offer here. Copies of all Rhodri's scans and medical notes were sent to Texas, and in October, the American consultant and the Welsh consultant began to work together to find the best treatment for Rhodri. Much to everyone's amazement, he showed a clinical response and his lungs cleared and his pain eased. We were thrilled. He continued on this treatment, coping well with the chemotherapy and was able to regain some quality of life.

He became the joker again and even went out in his wheelchair a few times with his girlfriend and mates. He was so chuffed to able to go to his beloved rugby club with his friends and out with his pretty girlfriend, Jemma again. We had a lovely Christmas, Rhod was the life and soul of the party again and we all enjoyed having lots of friends around.

We arranged to go to Texas on 21st January where Rhodri was to have a consultation for surgery on his pelvis and proton therapy for metastases, but unfortunately, it was not to be. On New Year's day, Rhodri was distraught when he woke to find he had no feeling at all in the lower part of his body. He was paralysed from the chest down, but at least he could no longer feel the excruciating pain in his legs. He then lost the use of his right arm and most of the use of his left arm but despite the terrible pain, he still insisted on going daily via ambulance for radiotherapy treatment. He had been on oxygen for some weeks and was struggling for breath when he finally lost his battle on February 25th 2006. He was so incredibly brave and a real inspiration. He knew he was dying but he wouldn't give up because he didn't want to leave us, he loved us so much, just as we loved him. He talked about dying and although he knew it was going to happen, he still prayed every day for a miracle as he planned his funeral. For us as his parents, that was so hard to deal with.

His passing was very peaceful, he was at home where he wanted to be with his mum, dad, brother and beloved dog. He knew he was dying that day and whispered that he was scared. I held him close and reassured him that we'd always be together no matter what, and he then closed his eyes and went to sleep for the last time.

Rhod was so strong and had such vitality. Throughout his illness he sold wristbands to raise money for Macmillan Nurses and his friends raised £3,000 for Velindre Hospital. He would be so proud to know that in the last 12 months, The Rhodri Jones Memorial Appeal Fund has amassed more than £55,000 to help fund research into this cruel disease so that others can be treated more successfully and hopefully cured. Rhodri had many friends and they arranged for the National Blood Transfusion Service to make a special visit to the rugby club so that they could all enrol as blood donors and give blood annually in Rhod's memory. What a wonderful gift that doesn't cost a penny!

Over a thousand people attended Rhodri's funeral. The choir sang his favourite hymns and the service was a celebration of his life. Outside, it was snowing lightly even though the sky was blue. Rhodri would have been so proud to know that no less than four famous, Welsh international rugby players attended his funeral, including his all time hero, Welsh and British Lions star, Gareth Edwards, CBE, And each and every one of them shed a tear for our Rhod. He even had a police escort for the 6 mile journey from the chapel to the crematorium! Only Princess Diana and Rhodri Jones could stop all the traffic for their funeral procession! As we made our way through the neighbouring villages, people stared at us from their stationary cars and from the pavements and must have thought that a very important person must have died to have all the traffic halted and a police escort for the procession. And they were right - it was a very important person, it was our Rhod, our beautiful son. And now Rhodri is as he should be - free from pain, walking, running, doing cartwheels and clowning around, and making the angels laugh just as he did when he was here with us.

Nos Da, Rhodri bach, Caru ti am byth,xx

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