SUMMER 2019 • ISSUE 83 • Late effects A helping hand for families of children and young people with cancer Laughter is the best medicine Lynda McMahon shares her son Benjamin’s story, from intensive cancer treatment as a child to his debut in a successful West End comedy play. Benjamin was diagnosed with acute lymphoblastic leukaemia (ALL) when he Benjamin and his family was four years old and he went through three years of intensive chemotherapy. For Benjamin, the challenges were multiplied as he contracted pneumonia in the midst of his treatment. He was on life support and put into a drug-induced coma in the intensive care unit at The John Radcliffe Hospital in Oxford. Thanks to the professionalism of his medical teams and, most importantly, his own sheer determination, he pulled through with no brain damage, which we were told he may have suffered due to the period he was starved of oxygen. He spent a month in hospital learning to walk again and gaining strength before restarting chemotherapy as he still had the leukaemia to fight. Unfortunately, Benjamin’s cancer returned after 18 months of remission. He needed a further two years of chemotherapy and had cranial radiotherapy too as the leukaemia had reappeared in the fluid around his brain. With over 70 lumbar punctures and many general anaesthetics, viral encephalitis, shingles and a host of other infections and complications, this was more than enough for one little body. Benjamin missed a lot of school and INSIDE What are Coping with The science had to contend with being dyslexic THIS late effects? emotional late effects behind late effects Pages 6-7 Page 8 Page 10 (...continued on page 2) ISSUE: 2 Contact Issue 83: Late effects audience laugh out loud was so Cover story continued... special for the clinicians who had and dyspraxic but he always treated him for so many years, and it managed to just do enough to was very emotional. get him through his exams and to Editor’s note college. He went onto drama school Benjamin is now in the West End with the play and is continuing to Claire Shinfield in London to follow his dream of acting and graduated with a degree make many people laugh and smile. Email: [email protected] (BA Hons in Acting) in 2017. We are beyond proud of our boy. Not all families are able to completely leave the cancer world As we are truly grateful for behind after treatment has finished. Benjamin’s care, I now volunteer Sometimes, a patient can have long- with the paediatric oncology team term side effects which need further and I love being able to help the care and support from specialists. children and their parents every Our back to basics article (p 6-7) week in clinic who are going explains everything you need to through their cancer treatment. know about what late effects are, what follow-up care involves and There is a real feel-good factor why all ex-patients should attend to giving something back to the their clinic appointments. doctors and nurses who took care Living with the effects of cancer can of Benjamin with so much love, be really hard. We hear honest and kindness and understanding. inspiring stories from parents and survivors who have experience of a variety of late effects and how they Benjamin are managing them. graduating Benjamin during chemotherapy We are not just talking about physical side effects either. Psychologist Dr Borrill explains some As soon as he finished drama of the many common feelings felt school, Benjamin was given a by survivors and their families in the leading role in ‘The Play That Goes weeks and months after finishing Wrong’ (an Olivier Award-winning treatment (p 8). comedy) and he toured the country The good news is that more and for ten months. I was thrilled to take more research is being done to find his two oncology consultants and out why late effects happen in the his outreach nurse to see Benjamin first place, and to see how best to perform at the Oxford Playhouse. support patients in their recovery Seeing Benjamin making the and throughout their life. Contact is a free, quarterly magazine for families Editorial Board: Managing Editor – Ashley Gamble Jane Icke – Parent, Derby of children and young people with cancer. Editor – Claire Shinfield Katherine Ince – Survivor, London Contact aims to reduce the sense of isolation many families feel Medical Adviser – Dr Martin English Dr Vikki Langford - Psychologist, Birmingham following a diagnosis of childhood cancer. Contact is produced by the Medical Adviser – Dr Bob Phillips Rebecca Mulholland - Psychologist, Sheffield CCLG in collaboration with CCPA. Children’s Cancer and Leukaemia Nursing Adviser – Rachel Hollis Rachael Olley – Parent, CCPA Group brings together childhood cancer professionals to ensure all Jenny Baston – Nurse, Leeds Gayle Routledge – Parent, Stafford children receive the best possible treatment and care. The Childhood Jane Cope – Nurse, Cardiff Samantha Schoolar – Survivor, Coventry Cancer Parents Alliance is a parent-run organisation with the common Helen Dickinson – Social Work team, Leicester Gill Thaxter – Parent, Coulsdon aim of working together to support children and young adults with Mike Francis – Parent, York Nicky Webb – Nurse, East Midlands cancer and their families. Contact magazine was founded in 1998 by The Lisa Thaxter Trust and CCLG. The contents of Contact are the copyright of the publishers. Articles may be reprinted without charge provided that credit is given to www.cclg.org.uk Contact magazine. A copy of any reprinted article should be sent to the editor at the address above. Please let us know your thoughts and feedback about Contact by emailing [email protected] ChildrensCLG CCLG_UK Past issues of Contact: The wide variety of articles published during the year in Contact adds up to a valuable and informative reference archive. If you would like any back issues, please contact the Editor (email address p2). Details of key articles in previous editions are listed on our website at www.cclg.org.uk www.cclg.org.uk Issue 83: Late effects Contact 3 when the (maybe metaphorical) News in brief end-of-treatment bell is rung. This New treatment could become is not the end of how cancer will first ever targeted therapy affect me, my family, or my life. It is for DIPG the end of the chemotherapy or the Scientists have discovered a new drug radiotherapy, but not the closure of class that can kill brain cancer cells with the story. It is a different chapter. ACRV1 mutations and shrink tumours in mice. Clinical trials for children Adjusting to this new world, where with diffuse intrinsic pontine glioma there may be long-term effects from (DIPG) are due to start in 2021. (Source: cancer or its treatment, and checking Institute of Cancer Research) for those which may appear late, sometimes years after, is the subject Medical adviser German study identifies of this month’s issue. We have articles increased mental distress Contact’s medical adviser, on how it’s been experienced by a amongst childhood range of families, tips on coping with Dr Bob Phillips (Senior cancer survivors the worries and anxieties which come Academic Consultant at A study has found all forms of out of scans or tests or the hidden common mental distress were University of York, Consultant reaches of your brain, the benefits increased among survivors and Paediatric Oncologist at of living healthily and how long-term recommended psychological screening Leeds General Infirmary and follow-up can help. We know there and care as part of long-term aftercare CCLG member) writes... is still loads of work we need to do in response to increasing rates of in researching the causes of cancer childhood cancer survivorship. he other side of a hurricane and its treatments, but we also know (Source: Cancer Medicine Journal). is a two-handed play by that there is tonnes more we need Peach and Gibson* which to do in working out how best to T Placenta may be linked to explores the aftermath of cancer live beyond cancer. first DNA mutation that can when treatment has blown by, giving lead to childhood leukaemia a chance to emerge from shelter. ‘Cancer is a chronic disease’ is Common childhood acute leukaemia is Life has been torn and battered, a phrase you sometimes hear in thought to be caused by two different flooded and lashed. medical talks and lectures. As a soundbite, it works because it’s DNA mutations, one inside the womb and one outside. Scientists have shown Some things can be repaired, old short, slightly alliterative, and sounds that DNA damage signalling from the things can be left and new things emotional. It’s not quite clear what mother’s placenta might contribute taken forward. Some things cannot it means, but that’s no disadvantage to the first ‘hit’ of mutations. (Source: be made better, and will always be either. We should probably be using Scientific Reports). slightly broken. Some things are it more in conversation to tell those only discovered later, when a shed who have not been affected how the New genetic risk points for is unlocked or a new wind blows. journey doesn’t always finish with B-cell leukaemia identified the last drips of doxorubicin. I think what is trying to be highlighted Scientists have identified two new here using the hurricane analogy is *The Other Side of a Hurricane - genetic points where mutations could the truth many people experience www.tobypeach.co.uk/thehurricane lead to the development of B-cell childhood lymphoblastic leukaemia, as well as more insight into the genetic and biological basis of the disease.