A father’s love inspires Omagh man to take on huge challenge

NEXT month, Paul Rainey will climb onto his bike at Land’s End and start pedalling. He won’t stop until he reaches John O’Groats – 12 days and over 1,000 miles later – in a journey fuelled not by adrenaline or ego, but by a love for his daughter.

“I’m 50 in August,” Paul says with a smile. “It’s nothing like a massive mid-life crisis!”

On the contrary, the former Omagh man is on a mission with purpose. Paul and his friends Tim Sherwell and Chris Burden will be cycling the length of Britain as ‘Team Eva,’ raising money for Sarcoma UK – a cause that has become deeply personal for Paul.

In April 2022, Paul’s daughter Eva – then 13 – was diagnosed with an extremely rare form of sarcoma cancer called SEF (Sclerosing Epithelioid Fibrosarcoma). In fact, it is so rare, only a handful of cases have ever been recorded.

“That July she had surgery to remove a lump in her back – which was the only symptom – although the lump was the tip of the iceberg,” Paul recalls. “Inside it was a tumour which was the size of a large grapefruit.

“We found a surgeon who was able to take on the complicated surgery – they had to remove part of her ribs and spine to get as much of the cancer out as possible. Then they did radio therapy after that to try and stop it coming back.

“From the start I had a really bad suspicion that it was a late diagnosis and so I was very afraid that it would metastasise. Within a few months they could see that indeed there were nodules on her lungs, where it had spread.”

Eva’s cancer had advanced. And options were scarce.

“I asked about immunotherapy at the time of her diagnosis. They said there was no chance because it’s not a standard of care… the treatment’s not available on the NHS for Eva’s cancer type.”

But Paul wasn’t about to accept that.

“Eventually, one of the leading experts in sarcoma in the UK suggested trying immunotherapy because there had been some studies in America where it had shown some signs of helping. However, the doctors said that it would be challenging to get immunotherapy for Eva’s cancer type, mainly because it isn’t licensed for use in the UK for that purpose.”

Paul did his own research, contacted the corresponding drug company himself and helped to get Eva on immunotherapy for a year.

“Initially it showed signs that it was working but then it stopped working – which was typical because sometimes the cancers become resistant.

“They stopped the immunotherapy at the end of last summer and a few months later tried a different cancer treatment called Pazopanib, which had been used to treat some SEF patients in the USA. It is designed to inhibit the progression of certain cancers.

“Again, the relevant drug company was contacted and agreed to provide the drug on a ‘compassionate use basis’ for Eva. Unfortunately that treatment didn’t show any sign of providing any clinical benefit and so was stopped after only a few months. Since then, there’s literally nothing.

“To look at her there’s nothing obviously wrong with her. But she’s in a situation now where the cancer is going to progress and there is nothing we can do and that’s why it would be great to raise some money so that some clinical trials could take place – if not for her but for someone in the future.”

A former student at Omagh Academy and a one-time saxophonist with St Eugene’s Brass Band, Paul grew up on the Hospital Road and is the son of Pat Rainey and her late husband Derick, fondly remembered locally for their time running Campsie Post Office.

The molecular biologist has lived in Wells in England for the past number of years. He has also been toying with the idea of cycling Land’s End to John O’Groats for most of that time.

“A couple of years ago, we had done some canoeing – my friends and I try to get together every August to take part in an activity – and we were in the back garden of our little cottage in Snowdonia having a beer. We were chatting and I said, ‘I’d love to do Land’s End to John O’Groats.’ My friend Tim said he’s always wanted to do it but in the end we said we’d think about it.”

After Eva’s diagnosis, the concept became laced with a new urgency.

“I asked Tim if he’d really like to do it,” Paul continues. “He said he would and I started looking into it. I found a company called, ‘Discover Adventure’ that we’re going to do it with… It’s really long – over a thousand miles, averaging 90 miles a day for 12 days. It’ll be intense but you try not to overthink it because you’d just freak out.”

Paul laughs as he recalls signing up first, then telling Tim afterwards.

“He umm-ed and ahh-ed for a few weeks before eventually agreeing to do it.”

Paul and his wife Jennifer have navigated the emotional upheaval of Eva’s diagnosis and subsequent treatments as best they can. However they harbour no illusions on where the family’s journey will end.

“It’s a rollercoaster,” Paul says. “The first bit is really bad because that’s when you have the first shock – it’s just awful. Then you sort of pick yourself up a bit and there’s a bit of a treatment plan. Then you’re told the surgery can’t happen because the surgery is too complicated. That’s awful too. Then two weeks later we find a spinal surgeon in Birmingham and he thinks he can do the surgery. It’s up and down, up and down.

“Both of us, myself and my wife, are OK but it still feels as though we’re taking a beating. Everybody copes in different ways.”

Eva, he says, is inspirational.

“Just incredible. I don’t even know how I personally would cope – nobody knows – but she’s got a dark sense of humour about it. That keeps her going. She understands the position she’s in right now; we learned the immunotherapy couldn’t go on. She’s focusing on her GCSEs and hanging out with her friends – she’s just getting on.

“We’ve taken the position that we don’t push anything for example, if she doesn’t want to go to school, then that’s fine. She does a very flexible school thing. She’s just doing the GCSEs which she loves doing.

“She loves art and is really talented at it, that’s her passion and so we encourage her to do as much art as possible. Something like this changes your whole perspective.”

Paul and Tim will begin their fundraising journey on June 3 at in Land’s End.

Jennifer and Eva will be there to see them off. Their 19-year-old son Leo, currently at college, will be cheering them on from afar. At the finish line in John O’Groats, 12 days later, Eva, Leo and Jennifer will re-join the cyclists and the group plans to celebrate in Inverness.

“It’s about doing something worthwhile and at the same time having something to focus on,” says Paul.

“You feel so helpless with this situation. There’s so much you can do about it but then there’s so much that you can’t do.

“We just don’t know how long Eva has because her cancer type is so rare, it’s almost impossible for the doctors to tell us about her prognosis at this point.

“We live in hope that something new will come along from clinical research to help her and other SEF patients.”

To support Paul and Team Eva, and raise vital funds for Sarcoma UK, visit www.justgiving.com/page/teameva. Your donation will help fund life-saving research, support families affected by sarcoma cancer, and bring hope to others like Eva.