Parents of boy who died from effects of cancer treatment call for more funding
|
Version 0 of 1. The parents of a five-year-old boy who recently died after suffering from the same kind of brain tumour as Ashya King have called for more funding and research into combating childhood cancer. The death of Skye Hall from the toxic side-effects of radiotherapy and chemotherapy has led NHS doctors to suspend the treatment regime he was on. Ashya King was the centre of media attention when his parents fled to Spain, fearing the possible damage to their son from conventional radiotherapy in the UK. He is now undergoing radiotherapy using targeted proton beams in Prague – although doctors say that the side effects will be similar with proton beam therapy because so much of the brain and spine have to be irradiated following surgery for this cancer. Unlike Ashya, Skye's cancer was advanced when it was detected. The best hope of a cure was thought to be the Milan protocol, a tough treatment regime involving chemotherapy, followed by radiotherapy and then further high-dose chemotherapy. His parents have only praise for their son's doctors and say that proton beam radiotherapy would not have helped their child. But, they say, better treatments for medulloblastoma and other brain tumours in children are badly needed. Skye's cancer, discovered just before he was due to start school in August last year because he was vomiting every day, was metastatic – it had spread within the brain and spine. He had brain surgery at the John Radcliffe hospital in Oxford within days to remove as much of the tumour as possible, before starting on months of chemotherapy and radiotherapy to kill remaining cancer cells. Sally and her husband Andrew were told what complications to expect at every stage, she said. "My husband struggled with having to sign the consent form every time but what choice does one have when you are trying to tackle a disease which left untreated would kill them," she said. At the end of the course of radiotherapy, Skye was very bright, walking and said to be in "good health". But he was then put on a further chemotherapy course with a drug called Thiotepa in accordance with the Milan protocol – a regime that had been reported to have good results in Italy. Doctors in the UK and internationally who specialise in the treatment of children with cancer talk all the time, because the cases are relatively rare. It was thought within that community that the protocol offered the best option for a child in Skye's position. He had a one-hour infusion of the drug for three days. "On 1 April Skye's MRI scan gave us much awaited good results that Skye's tumour was significantly reduced and all that was potentially left was scar tissue," said his mother. "He was discharged but was unable to walk. At that stage it was attributed to muscular wastage from being bed bound for so long." But Skye was suffering from the effects of his aggressive treatment, which had caused nerves in the brain and spine to die. He became paralysed from the neck down. His doctors told the family he was a victim of radio/chemotherapy neurotoxicity. "Due to it being acute rather than chronic over a very long period of time it is widely agreed that is was certainly treatment related, most likely due to a combination of hyperfractionated [twice daily] radiotherapy closely followed by high dose Thiotepa," Sally said. She said she does not blame anyone. "For us, facing his initial diagnosis, once the shock had worn off, we were full of hope, the doctors had a 'plan', it was going to be a long, hard journey but we had hope. "Strangely I have never felt angry at the fact that Skye developed the disease in the first place or that the treatment was his cause of death. I believe this can be attributed to keeping an open line of communication with our incredible consultant Dr Sheila Lane. "She has always been honest, willing to explore any ideas we researched and presented to her and was always happy to help us gain second opinions both within the UK and internationally, which we did often. I cannot stress enough the need to develop trust between doctor and patient. She always put Skye at ease too, which was incredibly important to us," she said. "The NHS have so much bad press but our experience has shown the NHS to have a wealth of dedicated, professional and caring people who go beyond their duties to help the patients entrusted to their care." Skye's parents embarked, with the doctors, on a desperate hunt for any treatment that could save his life, but those drugs that were tried failed to help him. He became progressively weaker and died on 29 August, from the toxic effects of his treatment. Sally Hall described Skye as "an extraordinary little boy" who, young as he was, helped publicise the need for more funds for cancer research. He started a Facebook campaign asking people to help him make the biggest Loom Band in the world, which would reach to the moon. "He was a beautiful, witty, and engaging boy who loved magic, telling jokes and giving to others," she said. "Some people who didn't know Skye have said at least he is not in pain and is at peace now but let me tell you, he chose life every day during his illness, regardless of pain, regardless of being paralysed. He had his mind and his mouth which he used to inspire people with his wise words. "His video to his 'fans' during his last hours where he said 'make the most of what you've got' is what I am trying to do every hour but it is hard doing it alone. I miss him dreadfully." She and her husband started a charity, Blue Skye Thinking, to advocate better treatment. Doctors agree that research into childhood cancers like Skye's and Ashya King's is underfunded because of the relatively small numbers of cases compared to adult cancers – there are fewer than 100 medulloblastoma cases a year in the UK. Sheila Lane, Skye's consultant at the John Radcliffe hospital, said: "What is clearly evident is that there is a desperate need for better and indeed new treatments for childhood brain tumours. The treatment protocols worldwide are not curing enough patients and those that are cured are displaying significant problems in later years." Simon Bailey, professor of paediatric neuro-oncology at the Royal Victoria Infirmary in Newcastle, said: "To make real progress in treatment there needs to be urgent, significant funding. "In recent years we have been concentrating on not only trying to cure children with medulloblastoma, but trying to identify biological markers that can guide us to reduce treatment in those that do not need the same intensity of treatment. We are very concerned about the consequences of cure in the long term, as this has a profound effect on the future of children, young people and their families." |