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Four-year-old Lincolnshire boy flies to Florida for pioneering brain cancer treatment

A little boy whose brain cancer has returned for the second time has flown to Florida for specialist treatment in a bid to save his life.

James O’Conner, 4, was first diagnosed with anaplastic ependymona, a malignant brain tumour, in February 2016.

Following treatment, the tumour was removed but the aggressive cancer returned in February this year.

Now little James has been selected for proton therapy in Florida which directly targets the tumour and has fewer side effects.

Speaking from Florida, his dad Carl said the family would be in America for nine weeks as James is having treatment almost every day.

He said: “He deals with everything that is thrown at him with a smile on his face.

“It’s hard to see your son being put to under anaesthetic every day because he has cancer, it’s not an easy thing. We try to make the best of a bad situation seeing him smile and being cheery helps us get through it.”

James’ family were told he had a 75% chance of living for five years when he was diagnosed in 2016.

James O'Connor, who has travelled to Florida for cancer treatment
James O’Connor, who has travelled to Florida for cancer treatment

He then had surgery to remove a tumour from the back of his head. He then developed complications from the surgery and was unable to fly to America for further treatment and had 56 weeks of chemotherapy at the Queen’s Medical Centre in Nottingham instead.

James finished his treatment in March 2017, but the tumour was found to have returned eleven months later.

He has been through surgery to remove the tumour and needed proton therapy to complete the treatment.

Mr O’Connor said the NHS applied for proton therapy for James in Germany and Jacksonville, near Florida – and Florida was able to treat him sooner.

James O'Connor has travelled to Florida with his family
James O’Connor has travelled to Florida with his family

The NHS is funding the treatment and the travel for Mr O’Connor and his wife, Chantelle. But the family need to raise around £8,000 fund travel for James’ twin brother Joshua.

The treatment is already underway expected to last until mid-June.

He said: “Radiotherapy is X-Rays and they travel through the whole brain. The way they do it with the proton beam is to fire protons at the target area where the tumour was in his brain. We don’t want his whole brain going through it as that causes side effects.”

Mr O’Connor said that the treatment has been going well so far.

He added: “Radiotherapy can cause problems years down the line such as hearing loss and memory loss, but proton therapy aims to reduce this.

James having treatment
James having treatment

Mr O’Connor said it had been a difficult journey for the family.

He said: “When we went through it the first time the chemotherapy was arduous and long, and it was hard for him to go through. Then to be diagnosed as a re-occurrence was very difficult.

“The first time we felt quite shell-shocked, you don’t know how to respond. There are a variety of emotions and upset and then you have to go through it again.”

The family’s barber, Rachel Howard, has decided to take part in the Tough Mudder challenge to help raise money for the family while they are out there and to give funds to research charities.

Mr O’Connor said: “We are grateful to her for wanting to help us. It is very humbling and we can never say thank you enough times.”

Rachel, who owns Just Gents in Sleaford, said the family touched her heart and she wanted to fundraise for them.

She said: “The little boy comes into our shop and he has his haircut. The mum and dad have to be so strong for their one little boy and for the other little boy who is going through the treatment.

” I thought if I can raise something it will help. It touches my heart as they are such a lovely family.”

To donate visit www.justgiving.com/crowdfunding/jamesoconnor