‘HE WORRIES MORE ABOUT EVERYONE ELSE’
Eight-year-old with extremely rare cancer has spent years in pain but...
JAMIE JONES has been in and out of hospital since he was two years old As a toddler, he was constantly falling over and developed a limp that led his parents to get him checked out. Many appointments and scans later revealed he had osteomyelitis, a bone infection. After two operations and a two-week stay in hospital he was on the road to recovery.
Just over a year later though, pain returned in his legs and knees. His father, Luke Jones, said this left the young boy in tears most nights, in unbearable pain. Further scans showed he had inflammation in one of his joints and this was then diagnosed as chronic recurrent multifocal osteomyelitis (CMO), which is incredibly rare.
The following years consisted of Jamie taking daily painkillers and steroids, before an eye injury in 2019 raised more issues. After being hit in the head by a ball, Jamie’s eye became swollen and nothing helped its healing. This was put down to his condition, and he was prescribed a year’s treatment of weekly injections in hospital.
But nine months into the treatment it was getting worse, which was incredibly rare for children going through the same.
A biopsy was carried out and, on January 28, 2021, the family’s world was turned upside down when they were told Jamie had langerhans cell histiocytosis (LCH), an extremely rare form of cancer that can damage tissue or cause lesions through parts of the body, including bones.
“The oncologist said he had never actually had CMO (which he had previously been diagnosed with) and it was LCH all along. He said it was incredibly rare to have either of the diseases, but to have both together was impossible,” said dad Luke, from Mountain Ash.
Since his diagnosis in January, eightyear-old Jamie has been on two sixweek courses of chemotherapy to try to destroy the cancer, with multiple trips back and forth to Cardiff’s University Hospital of Wales.
“He worries more about everyone else,” added Luke.
“When we are in the hospital, he says to us, ‘It is not right that young girl is in here ill’, he says that they shouldn’t be there. We tell him ‘neither should you’. He is OK, he doesn’t trust doctors any more because he has had so many different treatments and his pain has kept coming back.
“It was a lot for us all to take in, but he does understand, we have spoken quite openly about it and we always have, he knows the exact same as us. He has gone back to school, he just wants to see his friends again, so much time away from them, he has really missed them.”
One of the other things Jamie has missed through lockdown is playing with his team-mates at Mountain Ash RFC. The under-9s player won’t be able to train with his friends for a while as he needs to avoid physical activity, but that hasn’t stopped the club from raising his spirits.
Over the past two weeks, the rugby club, based in the Cynon Valley, has been walking, running and cycling the miles that make up the distance from Wales to Johannesburg in South Africa. The campaign, titled JoBurg for Jamie, has raised more than £12,000 for the family to enjoy when Jamie is able.
The fundraising campaign has also been chosen by Cardiff Blues as one of their charities to support this year.
“Jamie’s coaches and members of Mountain Ash RFC committee wanted to show their support to Jamie and his family and decided to organise a fundraising event, something which would not only generate financial donations but something where the whole club and wider community could get involved to show solidarity,” said Luke.
The campaign has been a much needed distraction for Jamie and his whole family, who have also joined in with the 8,172-mile quest.
Jamie and his team-mates completed the final miles on Sunday, walking from his home to the club in Mountain Ash.
Luke said: “We have not been able to thank everybody personally. We just want the club to be recognised for what they have done. What they have done for us, it has taken our minds off what is going on. Me and my wife are extremely grateful.”
You can make a donation at www. j ustg i v i ng. c om/ c r owdfunding/ mountainash-rfc-2