Solving Kids’ Cancer UK

Peter's Campaign

12-year-old Peter was diagnosed with neuroblastoma in early 2019. Devastatingly he relapsed in August 2020 after being clear of disease for six months. Since January 2022, he has been enrolled on the DFMO study in Charlotte.
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12-year-oldPeter is a keen gamer and loves all thingsLegoandplayingMinecraft. He enjoys spending time cycling,swimming andcrafting,especiallydrawing and cross-stitchingand 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 had no evidence of disease in February 2020. Just six 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.

Relapsed neuroblastoma is difficult to treat and options are limited on the NHS. Peters campaign remains open in case he needs potentially life-saving treatment in the future not available through the NHS, which could cost hundreds of thousands of pounds.

Peter's Story

Peters parents first noticed something wasnt 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, these symptoms escalated to wobbly walking and difficulty going up and down stairs. As the family were away for the Christmas period, on New Years Eve, Peters mum, Mandy, took him to his grandmothers GP who immediately sent the family to A&E.

A few hours later and following an MRI scan, 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. He underwent emergency surgery to remove the part of the growth causing the pressure. The operation was a success in releasing the pressure, but Peters spinal cord injury did not make the immediate recovery 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 Childrens Hospital, which was nearer to home. But before the family were transferred, they were given the devastating news that the growth in his thorax was neuroblastoma, and he began an intensive course of chemotherapy. During this time the family received some good news Peters cancer originally thought to be high-risk neuroblastoma was downgraded to intermediate-risk neuroblastoma. 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.

Peters treatment officially finished in February 2020, and the attention was turned to his spinal cord injury. In over a year since it had happened, 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. The pandemic put a stop to many things, but his family found ways for Peter to stay active and used the precious time at home together to take a breath after many months of trauma. They also began to make plans for the future post-pandemic. Peter was still being scanned and tested regularly but his parents felt as if the cancer was behind them.

Relapseandenrolling on the BEACONstudy

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 he had relapsed. Adding to the devastation, neuroblastoma 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. The tumour and pelvic lesions remained stable throughout, and the family received the wonderful news that there was no longer any evidence of disease in his bone marrow.

Next steps and enrolling on the DFMO study

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. Following the scans, 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 though and a relief when 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 they flew out to North Carolina for the first dose of treatment at the end of January 2022. If Peter's disease remains stable or better, he will continue the DFMO study until January 2024 with a further five trips to the US required as part of the trial.

In the last year Peter has, despite all the cancer treatment, continued to grow in strength and independence. He is a determined, resilient young boy who has never once asked why this has happened to him but has instead pushed himself to achieve things that have amazed us and made us so incredibly proud. It is rare not to see a smile on his face and he inspires everyone whose life he touches. His spinal cord injury is not holding him back, only the cancer is, says mum, Mandy.

How you can help

There are manyways 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 wont matter if you leave a space before the number, if you include a £ sign or whether you use upper or lower case.

Solving Kids' Cancer UK's children's fundraising campaigns

Funds raised will go towards helping Peter and his family. If Peterno longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Peter, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.

About the charity

Donations are paid into Solving Kids' Cancer’s general funds for our charitable activities. We help families affected by neuroblastoma through the provision of support and information; as well as investing in research and advocating for access to better treatment

Donation summary

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+ £4,453.75 Gift Aid
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