A Sussex family will be celebrating an extra special family Christmas this year following the reuniting of a twin brother and sister separated by treatment for a brain tumour.
Charlie Clayton, aged 10 from Worthing, was diagnosed with a rare craniopharyngioma brain tumour in March and underwent surgery to remove as much of the tumour as possible.
After the tumour continued to grow, surgeons were unable to operate for a second time as the location of the tumour meant there could be a risk to his eyesight – so Charlie was referred to The Christie NHS Foundation Trust in Manchester for proton beam therapy treatment.
Proton beam therapy (PBT) is a specialist form of radiotherapy that targets certain cancers very precisely, reducing side-effects. It targets tumours with less damage to surrounding healthy tissue and is particularly appropriate for certain cancers in children who are at risk of lasting damage to tissues that are still growing.
The Christie is home to the first NHS high-energy PBT centre in the UK as part of a £250m programme for a national PBT service funded by NHS England. The centre opened in Autumn 2018, and the first patient was treated in December 2018.
The second NHS centre is currently being built at University College London Hospitals. When complete, the 2 centres will each treat up to 750 patients every year.
Since April 2008, eligible patients who required proton beam therapy have been able to access treatment abroad. Some patients will still need to travel abroad for treatment until both NHS proton beam therapy centres are fully operational.
Following assessment by a national panel of experts, who reviewed the details of his case and agreed that he was eligible for PBT treatment, Charlie was accepted for treatment in Manchester and began a course of 28 sessions over a 6 week period in October.
Sadly for the Clayton family, it meant that Charlie and his twin sister Megan would need to be separated whilst Charlie stayed in Manchester with his mum Stacy throughout his treatment. Megan had to stay at home with her dad in Worthing whilst Charlie and Stacy stayed in a serviced apartment in Manchester city centre as their base for the duration of the treatment.
Mum Stacy said: “It was a crazy time. It was hard on both Charlie and Megan and our wider family too. As twins, they are very close and it was the first time they had been separated for more than a few nights. They both found it very difficult, but we focussed on getting Charlie through his treatment and that kept us going. He got tired through his treatment but fortunately he coped OK. The staff were great with him and organised activities and Megan kept him busy with messages and video calls.
“Like any siblings they have their ups and downs but they really missed each other and they were so very happy to be reunited once we could go home.”
Charlie completed his treatment in October and the family are now looking forward to a small Christmas, with just the 4 of them to ensure they are COVID-19 secure.
Stacy added: “We have been told Charlie is at no greater risk of COVID than anyone else, but we think under the circumstances we will keep our Christmas small this year. We’re looking forward to it. It will be nice to be able to spend some quality time together after the hectic year. We wouldn’t have got through this year without the NHS and The Christie, so we really are very grateful for all we have. It might be small but it will certainly be a Christmas to remember.”
The Christie NHS Foundation Trust was the first specialist trust to be rated as ‘Outstanding’ twice (in 2016 and 2018) by the health regulator the Care Quality Commission (CQC). It referred to The Christie as ‘a leader in cancer care’ and ‘a pioneer in developing innovative solutions to cancer care.’ The CQC praised the Trust’s staff which it said ‘go the extra mile to meet the needs of patients and their families’ and that they were ‘exceptionally kind and caring.’ In 2017, the CQC rated The Christie as the best specialist trust in the country, and one of the top three trusts overall in England.