Peter

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, 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, Peter’s mum, Mandy, took him to his grandmother’s 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 Peter’s 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 Children’s 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 – Peter’s 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.

Peter’s 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.

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 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. Peter's disease remained stable throughout trial which involved a further four trips to the US and in July 2023, following a PET scan, the family received the wonderful news that the remaining disease was not active. Peter completed the DFMO trial in January 2024 with scans showing that he continued to be NEAD. He will continue to have periodic scans for the next couple of years but for now the family are celebrating reaching the end of treatment milestone for the second and, hopefully, last time.

Peter enjoys spending time cycling, swimming, playing tennis and badminton and crafting, especially drawing and cross-stitching.

_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Peter and his family. If Peter no 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.}