Lincolnshire family turning tragic loss of eight-year-old son to brain cancer into hope for others

In the early hours of February 28 this year, Carl and Chantelle O’Connor, of Greylees, saw Joshua pass away as they held his hands after he lost a six-year battle with brain tumours, going through multiple surgeries and treatments.

Carl, 35, serves in the RAF, who he says have been wonderfully supportive throughout their ordeal. He said: “James fought with everything he had, now we will continue to fight in his honour.”

He and Chantelle, 33, have launched a GoFundMe page (https://gf.me/v/c/yyr3/donations-in-memory-of-james) to split any donations given between two causes: Nottingham Children’s Brain Tumour Research Centre, headed up by James’ oncologist Professor Richard Grundy, to look into new treatments. The second half of the money will go towards a foundation that the family would like to set up in James’ honour.

Carl said: “We are intending to call it The James Anthony Foundation. We would like this foundation to help children like James, and families like ours.

“We are going through the grieving process but are putting together the things on the journey that helped us, to share with others.”

Setting a goal of £1,500, this week it topped £3,080. Carl said: “The generosity of people is very humbling and kind.”

He recalls: “James had his own way of doing everything. He was determined to do things himself, even when he could hardly walk. He dragged himself through it all with a smile on his face, a laugh and holding his cuddly Cheshire Cat.”

James also leaves his twin brother, Joshua. Carl said: “We have always been open to Joshua throughout and he has experienced things with James, but he is doing OK, as he knew it was going to happen. He has been amazing support for James.”

James was diagnosed aged two years and two months in February 2016. “He was a fun, active toddler, but then started being sick and wobbly on his feet,” remembers Carl.

They spent two weeks back and forth to Lincoln for tests to determine the cause until a doctor doing research in his spare time into children’s brain tumours called for a CT scan and found a mass on James’ brain the size of a lemon.

He was rushed to Queen’s Medical Centre in Nottingham for a ten-hour operation to successfully remove his tumour, but hours afterwards the trauma meant he had to learn to walk, talk and move again with constant physiotherapy. Bell’s Palsy affecting one side of his face meant James had affected his sight too.

He then underwent 56 weeks of chemotherapy but just 10 months later in early 2019, doctors found he had another brain tumour.

“Obviously it was devastating,” said Carl. “He went through another seven hour brain operation to remove the tumour and then we went to Jacksonville, Florida for proton beam radiotherapy, living there for three months.”

Returning home, they found three more tumours in January 2019 in the top of James’ head. Experts resorted to fitting a silicon bubble in the top of James’ head to enable them to inject the chemotherapy treatment daily, directly into his brain, halting the tumours’ growth.

He underwent another six and a half weeks of radiotherapy - more than adults are advised to endure.

Another tumour had to be removed in January 2021 but that was followed by hydrocephalus causing pressure on James’ brain and two more operations to drain the fluid, spending six weeks in hospital under lockdown conditions limiting visitors.

Sadly the tumours then spread around James’ body.

“We chose not to scan anymore and he was put into palliative and then end of life care until he decided to go on February 28.

“We are forever grateful to the doctors and nurses for what they have done for us and it is time to repay that,” said Carl.