The mum of seven-year-old Sunderland lad Oliver Maw said his battle with neuroblastoma is "heading in the right direction", but fears that unless more than £200,000 is raised - the traumatic treatments or chemo-, radio- and now immunotherapy he has undergone could be for nothing.
Speaking to ChronicleLive, Phillipa Maw wanted to highlight how difficult the vital immunotherapy was for triplet Oliver. Diagnosed with the rare form of childhood cancer in February last year, the illness has turned the family's life upside down.
It is the same illness suffered by Bradley Lowery - and the foundation set up by Bradley's family are supporting Oliver's cause. So too are the Tyne and Wear Fire and Rescue Service, because Oliver's uncle Peter is a firefighter.
Oliver has stage 4 high risk neuroblastoma, and the Bradley Lowery Foundation are looking to help raise £260,000 to pay for him to have a specialist vaccine abroad which will lower the risk of the cancer returning. Philippa said this would be a huge relief.
Speaking about his current treatment, under the care of experts at the Great North Children's Hospital, she told ChronicleLive how between now and January 2023 he will be in and out of hospital. He has a ten-day stint of immunotherapy in hospital, before being given medication over a two week period, having a rest week, and then starting the process again.
The immunotherapy involves using antibodies to train Oliver's immune system. It's a painful treatment and involves a "pump" that must be attached to him. Phillipa said: "The run of immunotherapy was tough, but perhaps not as bad as it was in the beginning.
"When he was in hospital they expected him to be in for ten days because of the pain but he managed well. On the 29th of August he'll be back in for another ten days. Though he's not happy about it! He has to carry the pump about - it's small and it goes in a backpack but it's not ideal and especially difficult in summer when he wants to be outside!"
She said that Oliver - and identical brothers Owen and Oscar - find it upsetting when he misses milestones or can't play normally, and especially when Oliver might have spend an uncertain amount of time in hospital.
"It's just horrendous trying to explain to him if we need to just go to hospital and get checked over," Phillipa said. "Last week at the fun day he was spiking a temperature and we had to take him to get checked over. He often ends up having to miss things and ends up thinking why is it always me.
"It's not very nice. It's difficult for him to do all of the normal things children do - and it's going to continue when he starts at junior school in September."
The immunotherapy comes after successful previous treatments have helped to put Oliver on the path to being cancer-free. But neuroblastoma is extremely aggressive and has a high relapse rate. He was diagnosed with the disease last year after having become gradually more poorly over a four month period.
Mum Phillipa continued: "It's antibodies to help him built of immunity and fight the cancer himself. It's the last bit of treatment, coming after the chemotherapy and the radiotherapy. Obviously that's all been incredibly difficult, we had to travel down to London - that was horrible.
"The fundraising still has a long way to go. The vaccine is so important because it will mean we don't have to worry quite so much about it coming back. Oliver's come so far now but there's that worry that the cancer could come back. We are heading in the right direction for now, we just need to keep it that way. "
Oliver's firefighting uncle Peter Wilson took on the Three Peaks Challenge in July - during the astonishing heatwave - along with other members of the Green Watch from Sunderland Central community fire station. The team helped raise more than £4,000.
Crew manager Peter added: "I have to say it was one of the hardest things I have ever done especially in 34 degrees heat. I would like to think that nature decided to increase the temperature just to make the challenge worthy of what Oliver has to face every day!"
HIs wife, and Phillipa's sister, Alysa will be taking part in a sponsored skydive at Shotton Airfield in September as the fundraising continues. To date the entire fundraising effort has raised £107,000 towards the £260,000 total. To donate visit justgiving.com/campaign/Oliversfightagainstneuroblastoma
Alternatively, people can also donate £2 by texting the word “Oliver” to 70450.
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