11-year-old Peter is a keen gamer and loves all things Lego and playing Minecraft. He enjoys spending time cycling, swimming ancrafting, especially drawing and cross-stitching and his favourite animal is a rabbit! 

On New Year's Eve 2018, after complaining of backache and tingles in one leg it was confirmed that Peter had a growth in his thorax that was pressing on his spinal cord, causing a spinal cord injury. After emergency surgery, his spinal cord injury did not make the immediate recovery that was hoped for, leaving him with no movement or sensation in his lower body. Days after the surgery his parents were given the devastating news that the growth in his thorax was neuroblastoma. 

After enduring intense frontline treatment, Peter was no evidence of disease in February 2020. Just 6 months later, in August 2020, after noticing a lump on his skull, parents Mandy and Martin were told that Peter had sadly relapsed with the disease spreading throughout his body. 

Thanks to your incredible fundraising and support, Peter was able to enrol on the DFMO study in Charlotte at the end of January 2022. 

Peter’s Story 

Peter’s parents first noticed something wasn’t right in December 2018. He had been complaining on and off for a couple of weeks about backache and on a couple of occasions about tingles running up and down one leg. Between Christmas and New Year 2018 these symptoms escalated to wobbly walking and difficulty going up and down stairs. As the family were away for the Christmas period, on New Year’s Eve, mum Mandy took Peter to his grandmother’s GP who immediately sent the family to A&E. A few hours and an MRI later and it was confirmed that Peter had a growth in his thorax. Following a biopsy, a couple of days later, Peter suffered a spinal cord injury from where the growth was pressing on his spinal cord, and he underwent emergency surgery the next day to remove the part of the growth causing the pressure. Unfortunately, while the operation was a success in releasing the pressure, Peter’s spinal cord injury did not make the immediate recovery that was hoped for, leaving him with no movement or sensation in his lower body.  

Twelve days after he was admitted to hospital, Peter was well enough to be transferred from Edinburgh Sick Kids to Manchester Children’s Hospital, nearer to home. Before the family were transferred, they were given the devastating news that the growth in his thorax was neuroblastoma. 

After arriving in Manchester, Peter immediately began an intensive course of chemotherapy. During this time the family received some good news – Peter’s cancer originally thought to be high risk was downgraded to intermediate risk. His chances were further improved in May 2019 when surgeons were able to completely remove what remained of the tumour after chemotherapy. Peter then had a short course of radiotherapy to the tumour site and six months of maintenance treatment to prevent the cancer from returning.  

Peter’s treatment officially finished in February 2020, and the attention was turned to his spinal cord injury. In over a year since his injury, he had made amazing progress with his rehabilitation, regaining strength and independence, and was getting involved in many different activities including hand-cycling and swimming. As with everyone, the pandemic put a stop to many things, but his family found ways for Peter to stay active and took the precious time at home together as a time to take a breath after many months of trauma and make plans for their future post-pandemic. Peter was still being scanned and tested regularly but his parents felt as if the cancer was behind them. 

Relapse and enrolling on the BEACON study 

In August 2020, Peter noticed a lump on his skull. He was scanned and a couple of weeks later the family received the devastating news that his neuroblastoma had relapsed and, to add to the devastation, it had not relapsed in the original tumour site but had spread throughout his body. He had a tumour on his skull, lesions on his pelvis and evidence of disease in his bone marrow classing his relapse as high risk and vastly reducing his chances of long-term survival. He was immediately registered for the BEACON study and was randomised to the treatment arm that treats with chemotherapy only. To begin with, the treatment kept the tumour growth at bay, and he was classed as ‘stable’ but after four cycles of treatment, the tumour began to grow again.  

Peter crossed over to the alternative treatment arm of the trial which combines chemotherapy and immunotherapy and had a further six cycles of treatment. During the course of this treatment, the tumour and pelvic lesions remained stable, and the family received the wonderful news that there is no longer any evidence of disease in his bone marrow. 

Next steps and enrolling on the DFMO study

Following the completion of this treatment, Peter had radiotherapy to his skull tumour which all went to plan. Following more scans in the Autumn, the family were delighted to be told that Peter's pelvic lesions were no longer MIBG-positive and there were early signs of the radiotherapy having an impact on the skull tumour. At this point, there were no further treatment options available for Peter in the UK unless his disease worsened again so the family decided to 'wait and watch' until the next set of scans in January, after which they hoped to access the DFMO study in Charlotte, North Carolina.  

Peter spent the Autumn term settling in at High School and taking a much-needed break from treatment and hospital appointments. It was an anxious time however and it was with much relief that scans in January showed further shrinkage of the skull tumour and no progression of disease elsewhere. With these results, the family were able to go ahead with plans to enrol Peter on the DFMO study and, at the end of January, they flew out to North Carolina for the enrollment and first dose of treatment. If Peter's disease remains stable or better, he will continue on the DFMO study until January 2024 with a further five trips to the US required as part of the trial.  

Fundraising campaign 

Thanks to your support Peter's campaign has so far raised over two-thirds of the cost of the DFMO study. The family are blown away by the support they have received and the generosity of those who have campaigned, donated and raised funds on their behalf. 

His family are appealing for your help to raise £152,000 to ensure Peter can complete the study which aims to stop his neuroblastoma from coming back. 

How you can help 

There are many ways you can help Peter: by making a personal donation; by sharing and following his story on Facebook, holding a fundraising event; getting sponsored to take on a challenge.  

To donate by text, send “PETERB” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.  

Download our free Peter resources below to support your fundraising.  

Sponsorship Form   Campaign Poster    Event Poster

You can make a donation via this page.  

If you’d like to help to support Peter’s campaign, please get in touch with the fundraising team on 0207 284 0800 and [email protected] 

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