A distraught dad from Edinburgh has told how his family lost precious time with his son who was dying of terminal cancer while trying to find a treatment after the NHS could only offer palliative end-of-life care.
Ben Abbot, 47, from Portobello, had his world torn apart when his active eight-year-old son Rudi began to get debilitating headaches. The youngster also slept during the day which doctors thought was a viral infection but turned out to be an advanced brain tumour.
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When the doctors gave the family the crushing news that nothing more could be done, Ben found a trial in the US that he managed to get Rudi onto - but sadly it was too late.
He is now advocating for more funding and research to ensure there is better treatment available for children with cancer in the UK.
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 successful and showed promising results.
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."
Sadly after 10 months of no tumours, the football-loving youngster was once again fighting a rare and aggressive brain tumour which had tragically returned.
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 was called into the Sick Kids to discuss Rudi's results and medics had to explain that they had run out of options to treat the cancer.
The dad praised the tireless and incredible work the NHS staff across the Edinburgh hospitals did for his son and believes not being able to access more treatment is due to a lack of research and funding into childhood cancer across 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," he said.
The dad tried not to lose optimism and would do anything in the world to save his son's life.
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."
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Ben added: "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!"
Dr Edward Doyle, Associate Divisional Medical Director, NHS Lothian, said:
“Our deepest condolences and sympathies are with the Abbot family at this very sad time. We would urge the family to get in touch with us to ask any questions or raise concerns.
"The Royal Hospital Children and Young People has comprehensive services for children and adolescents impacted by cancer. The team look after children with solid cancers, including brain tumours, and blood cancers, in addition to benign haematology diseases such as sickle cell disease, as well as assessment, clinical treatments and care planning before and after bone marrow transplants.
"For children with solid tumours, our expert surgeons work closely with our cancer specialists to ensure appropriate care. The team are also involved in extensive research programs into children's cancer and two of the team are national clinical leads, supporting and informing the care of children nationally."
He added: “Sadly, there are rare, aggressive tumours where research remains sparse internationally. However, the team in Edinburgh are connected to clinical colleagues around the UK and abroad and discuss children with rare forms of cancer with expert colleagues in order to ensure the most effective care is provided."
You can keep up to date with Ben's story and the work he does on the Rudi Forever Instagram page.
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