Jude Mellon-Jameson: Family's battle for new cancer treatment for three-year-old Sheffield boy
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He loves dinosaurs, and animals. His parents are thinking about when he will start school.
But for Jude, life involves regular visits and stays in hospital – since he was diagnosed with a rare and aggressive form of cancer last summer.
Jude was discovered to have neuroblastoma, a rare form of the illness which affects 100 children in the UK each year.
But his mum and dad, Lucy and Arron, from Woodhouse Mill, are concerned about what will happen when that treatment ends. Now they are looking to fight for an experimental course of therapy in America which they hope could significantly reduce the chances of his cancer returning in the future.
But that will not be available on the NHS - they will have to pay for it themselves.
They are seven months into his NHS treatment with another seven to come.
There were no clear symptoms of cancer when Jude was first found to be ill, but Lucy noticed several different things.
“They all could have been very simple symptoms,” said Lucy.
“We didn’t notice a huge lump, and he had not seemed really unwell. There were changes in his behaviour and in him, but nothing was constant, it was often just for a couple of hours. We’d take him to the Children’s Hospital and then he’d be running around A&E.”
Eventually, Jude developed a limp, and was sweating during the night. He also had a slight change in appetite.
Then, one of the doctors at the city’s Children’s Hospital said he thought Jade may have an infection in his hip. He was admitted to hospital, and a pivotal moment came with an MRI scan the day before Jude’s third birthday.
It found a tumour, and the medical team sprang into action.
“I never thought it was going to be cancer,” said Lucy.
“We stayed in hospital, and there were so many emotions. But since then, we’ve not had the chance to get emotional because so much has been happening so quickly.”
They are hoping that Jude will be able to start school in September. Although at present he cannot go to nursery as he has to avoid infections. He has not been able to have his childhood inoculations because of his illness, either.
His family has kept a tally of the treatment has had to endure so far.
Since his diagnosis Jude has endured 90 days and 58 nights in hospital, including two in high dependency. He has had 21 days of having chemotherapy drugs infused, including a specific type of treatment called COJEC treatment, and high dose chemotherapy.
Since his diagnosis he has had 16 scans, 21 Covid swabs, 66 injections into his thigh, nine anaesthetics, seven operations or procedures including a removal of his primary tumour. He has also had a stem cell transplant, 10 blood transfusions, seven platelet transfusions, and has started wearing hearing aids due to chemo induced hearing loss.
This week he is starting radiotherapy and will then go onto immunotherapy. After that, his NHS treatment will end.
Lucy has been told children diagnosed with high-risk neuroblastoma have about a 40-50 per cent chance of long-term survival – which is five years. But she has also been told if it returns, that falls to 10 per cent.
Appeal for trial treatment in America
That is why she and Arron, a former Sheffield Wednesday goalkeeper, are looking to continue treatment in America when they finish their treatment in Sheffield.
They have launched a crowdfunding appeal to raise £350,000 to pay for that. You can log onto https://www.justgiving.com/crowdfunding/judescancerjourney to donate.
Lucy said: “He’s barely started his life before cancer has tried to snatch it away from him. We do not want him to go through this again. We have been told 40 to 50 per cent of children diagnosed with high-risk neuroblastoma will not respond completely to standard treatment, or the cancer will come back. If a child does relapse with neuroblastoma, their chances of long-term survival are less than 10 per cent.”
They have looked into two treatments currently being trialed in America. One is injections, the other is tablets. The idea is that it would mean his body would recognise and destroy any re-appearance of cancer cells. Any money they raise over what they need for the treatment will be donated to a charity which funds research into neuroblastoma.
While researching the treatment, they realised how important the NHS was. The American hospitals price lists included a treatment which Jude had received at the Children’s Hospital three times. It was listed in America at £1.4 million.
The family has raised money before. When they were receiving help from the Children’s Hospital’s PACT charity, they helped raise £13,000 for refurbishing the ward and for PACT.
The family says they have had great support.
Personal message from Sir Elton John
Jude is a big Sir Elton John fan – his favourite song is Rocket Man,
Before Christmas, Lucy joked with friends on social media, asking if anyone knew how to get a message from him.
Days later, she had a message from Sir Elton’s agent, asking her to call.
As a result, the singer, a dad of young children himself, sent a personal video message to Jude, as well as some signed CDs and toys, and a card containing a handwritten personal message. He has also received videos from Andy Day, Monty Don and Ed Sheeran
"It made Christmas for us all,” said Lucy. “The support we’ve had has been amazing.”