A devastated Scots dad has spoken of how he lost invaluable time with his son who had terminal cancer while he tried to a find a cure after the NHS could only offer end-of-life care.
Ben Abbot, from Portbello, first noticed that something was wrong when his eight-year-old son Rudi started complaining of severe headaches and sleeping through the day, Edinburgh Live reports. Doctors initially thought the youngster was suffering from a viral infection, but later found that he had an advanced brain tumour.
When the family were given the heartbreaking news that Rudi's cancer was incurable, Ben started desperately searching alternative treatment options abroad. He found a medical trial in the US and managed to get Rudi accepted - but tragically, it was too late to save him.
Now, the 47-year-old is campaigning for more funding and research into cancer treatments in the UK to help save other children.
The dad-of-two said: "You normally get misdiagnosed with brain tumours which happened to Rudi. He was misdiagnosed in April 2020 he started to sleep through the day and had headaches all the time.
"He also began losing weight and would be really ill for a couple of days then he was fine again. Doctors said they had done all the tests they could, ruled out anything serious, and thought it could be a post-viral infection.
"We had visited the hospital with him a number of times during lockdown and we didn't get an MRI till August and at that point, he needed emergency surgery. This consisted of a ten-hour surgery and then he was in the ICU for five days before they decided he needed another ten-hour surgery."
The surgery was a success and doctors were able to remove a significant amount of the tumour.
Ben said: "At this point, they were reasonably happy they got a lot of the tumour out and he went on to have proton radiotherapy in Germany before a high-intensity chemo in the UK. The bounce back from surgery was amazing. He would scoot to and from radiotherapy and be alert when he came home then he had four months of chemotherapy in the Sick Kids.
"The chemo was absolutely hellish, it sterilised him completely which was quite hard to watch. A lot of kids don't make it through the chemotherapy, it's gruelling.
"After that, it was a wait-and-see game. It's adult chemotherapy administered to kids so you can imagine how that affects them. The recovery from it was unbelievably slow but he battered through the sessions and was back to school which he loved."
"Rudi was a one-off but he was a different child afterwards. He then had three monthly MRIs which showed he was still tumour free - and in October that was a significant amount of time and it felt like we had gotten over the riskiest time for relapse."
However, 10 months later Rudi's tumour returned, leaving the whole family devastated. Ben said: "They then moved the scans to every four months but in February 2022 they called the day after the scan which never usually happens.
"We had to go straight up to the hospital and they told us there was nothing left to do and said they could start palliative care but he would be gone before Christmas."
Ben had a meeting at Sick Kids to discuss Rudi's results, at which point medics explained that they had run out of treatment options. The dad praised the incredible work of NHS staff in their efforts to save his son, and believes that not having better access to treatment is due to a lack of funding and research into childhood cancer in the UK.
"We went for a chat at the Western General while Rudi was at school. It was one of the grimmest conversations I have ever had - the team had to tell us there was nothing left that they could do. My legs just gave away.
"I lost it for nearly a week afterwards they said they couldn't do anything else - we never told him it was terminal."
Amidst the heartache, Ben was determined not to lose hope and began searching for treatments abroad.
He explained: "We looked anywhere in the world for a second opinion. It was in Seattle we found a trial. Kids that would be dead otherwise have responded well and been on it for years so we hoped that could be Rudi.
"We went to the States twice, once to get his cells harvested for the treatment, then we came back home for a month before going out again for the treatment to start."
Ben continued: "We made an adventure of it. I wouldn’t change it and I know Rudi enjoyed it as an experience - before he got too unwell.
"I was also lucky enough to be with him 24/7 - but other members of the family would’ve missed out on some important time for sure. When he got really unwell he had fluid on the brain and had to get a shunt but the disease had run rampant. It felt like when cancer returned, in the UK doctors had run out of options for what to do.
"Now I have lost Rudi I have to put my energy into something and that will be advocating to improve treatment for children with cancer in the UK. There is a massive lack of treatments across the world and a lack of research in childhood cancer so there are no trials available in the UK.
"The main thing for me is that he started this treatment in Seattle much later than he would’ve if we had trials being funded in the UK, and that could’ve made all the difference - we’ll never know!"
You can follow Ben's story and the work he does on the Rudi Forever Instagram page. NHS Lothian has been approached for comment.
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