Boy, 8, with inoperable brain tumour to be first from UK to try experimental treatment

An eight-year-old boy who was diagnosed with an inoperable brain tumour will become the first person from the UK to undergo treatment trials for the rare cancer in America. Rudi Abbot was diagnosed with a grade four pineoblastoma in August 2020 after suffering from severe headaches, tiredness and pain in his leg.

The rare and aggressive cancer accounts for fewer than one in 100 of all brain tumours, according to Cancer Research UK. Rudi underwent two 10-hour surgeries to try to remove the tumour – which was the size of a small avocado – but medics could only get rid of 70 per cent of the mass.

He then had four months of gruelling chemotherapy at the Royal Hospital for Children and Young People, Edinburgh, as well as six weeks of proton therapy in Germany. The treatments initially proved successful – but in February this year an MRI scan revealed the tumour had returned.

In April Rudi, from Portobello, Edinburgh, was accepted for a pilot programme of immunotherapy in Seattle that his family hopes will slow the growth of the tumour. His desperate parents Ben Abbot, 46, and Coline Henault, 43, are fundraising for the treatment, which costs £250,000, and have so far raised nearly £101,000.

Dad Ben said Rudi will be the first person from the UK to receive the CAR-T treatment. It will see medics remove Rudi’s T-cells, alter them to fight the cancer, and then reintroduce them directly into his brain. Next month, Rudi will head to out Seattle with dad Ben and his partner Mary Ramage, 39, as well as his mum and sister Iris, aged three.

Dad-of-four Ben said: “We are heading out to Seattle at the end of July to start the trial. It’s not a cure, but we hope it will slow the growth of the tumour.

“The trial is £250,000 and we think the two-month trip, for the flights and places to stay, will cost about £30,000. Rudi will have treatment every day for a month and hopefully we will go back once a month after that.”

Restauranteur Ben feared his son would not be accepted onto the trial after complications with American health insurance. But at the 11h-hour docs said Rudi could become a pilot case.

Ben said: “At Rudi’s scan in February this year we were told the tumour had come back. They said there was nothing more they could do for him and he had months, not years, to live.

“I went into a complete depression when we found out, I couldn’t get out of bed. Then my cousin in the States said there was a promising trial in Seattle we might be able to get on to.

“When the trial had started two years ago they were taking on international patients. But because you have to be there to get treatment every day for two months and then return once a month after that, they weren’t taking on international patients anymore.

boy, 8, with inoperable brain tumour to be first from uk to try experimental treatment
© Ben Abbot/SWNSC Rudi underwent two 10-hour surgeries to try to remove the tumour

“We spoke to the doctors, but they said while clinically Rudi was viable, and they thought he was a good fit for it, they couldn’t take people from outside of the US. They said if we were able to get US health insurance they would be able to accept Rudi, but it didn’t look like that was going to be possible.

“At the 11th hour we had a Skype call with them and they said Rudi could be a pilot case if we were able to self-fund it. It was a eureka moment for us and meant Rudi would become the first person from the UK to get on the trial.”

Rudi is on a ketogenic diet to try to reduce the amount of glucose in his body, which dad Ben said can make the cancer grow faster. The high fat, high protein, no sugar diet means Rudi can’t have sweets, which he struggled with at first – but Ben said he is still his fun loving, outgoing self.

Ben said: “We are trying lots of different things and hoping that combined they will have a dramatic effect. He did struggle at first with not being able to have sweets, but he is doing well and he enjoys the foods he eats.

“He was in school until two weeks ago but the chemo takes an effect which makes it difficult for him to go and very tired. He is a really outgoing, fun loving kid who is always the heart of the party – and he still is that person. The cancer has not phased him, he has kept us all going throughout this, he just gets on with everything and has barely moaned.”

To donate visit the fundraising page.

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