Au tum n 2 012 Iss ue 56 : Supp ort Networks CoA helping hand for familiesn of childrent andact young people with cancer Susan with her grandson Josh Cuddles all round Susan Miller reflects on the supportive role of grandparents when her grandson Josh was diagnosed with leukaemia. e were looking after Josh, our weekends when my son-in-law took I were able to take her, ensuring the day 7-month-old grandson, while over. Overall, Josh was in GOSH for 7 could be normal and joyous. his mum and dad took his months. I would go up on the train armed W Josh needed a bone marrow transplant sister out. He was fractious and unhappy with plated meals so Sarah would eat to give him the best chance of life. and I sensed something was really something tasty, and come home with Thankfully, a donor was found so he had wrong. Next day, my daughter Sarah bags of washing. Whilst at the hospital, his transplant and had to be in isolation took him to the GP and he was referred I could give Sarah a break so she would with only his parents allowed in and to the local hospital from where he be able to shower or eat or get some one other – me! When Christmas came I was then taken by ambulance with his fresh air. Even things like hair washing spent Christmas Eve with him while his parents to Great Ormond Street Hospital were difficult with an extremely sick parents were at home with his sister. He in London. He had leukaemia. and needy baby to care for. She was and I watched the snow from the hospital exhausted and anxious. It was really hard as a grandparent coping window, wishing for Father Christmas to not only with my grandson’s diagnosis We also had to consider the needs of come and bring him health and life. We but with my daughter’s heartache too. Josh’s sister who was desperate to play had an unusual Christmas Day with the The help and support you can give has to a fairy in her School Fair so Grandad and brilliant staff making sure everyone had be practical, plus love, treats and cuddles as good a day as possible. (for all of them!). Continued on page 2 Sarah stayed at the hospital with Josh during the week and came home at Milly PAGE 5 Sheryl PAGE 8 Team Talk PAGE 9 Children’s Cancer and Leukaemia Group - www.childcancer.org.uk/contact Contact Issue 56: Support Networks Continued from page 1 almost a truck to move all the things accumulated from the hospital), life Editor’s note... Unfortunately, he then developed veno- became more normal for us all with In recent weeks I occlusive disease and became extremely wonderful things to do again. The family have suffered the ill and, whilst he had been able to go were treated to a holiday in Disneyland heartbreaking situation home briefly between treatments, this Paris and there started a massive love of a very close friend time he needed constant care and life for all things Disney! being diagnosed with became centred around GOSH. Josh advanced cancer became very poorly but he would still Josh is 16 now – a strapping six foot and dying just two sit on my lap for a cuddle and manage a young man. He raises money for the weeks later. What has been the greatest little dance to his Disney videos. I can’t Leukaemia Trust by cycling 26 miles comfort has been the support that family throw those videos away! each year, and doing anything else he can to help. His passion is fishing and he and friends have provided each other. Eventually a breakthrough came. Josh goes off to College in September to take A random but ever growing email list needed to be anaesthetised and have a Fisheries Course. He hopes eventually has provided a means of updating as an endoscopy to see what was going to own his own Fishery. the news became progressively worse. on. We all sat outside his room awaiting But that same list has now become a news. There were lots of tears when The family were strengthened by this real source of support as memories we knew he was OK and they could awful time in our lives and we are all of happier times, and photos over the start him on medication. In the morning closer as a result. Thank heavens for years, are shared. Real friendships after we had all had a better night than strength and reserves that normally we are being forged from people who normal, we arrived at the hospital ready don’t know we all have! previously barely knew each other and to go and get breakfast to find Josh Josh undergoing treatment its likely that they will continue – any sitting up and giggling and demanding excuse to raise a glass to our much food. Thank God! loved and missed mutual friend! As someone who valued hugely her From then on Josh improved daily and friends, some of whom date back to on his return home (which required early childhood, she would have been Josh enjoying a holiday trip delighted at the way we are all pulling together to support each other. That support comes in different ways – practical, emotional, sympathetic. We all need support at times like this but what has become clear too is that we all have the capacity to offer support to others. The articles in this issue of Contact demonstrate that in very concrete ways. Sue Ablett, Managing Editor Email [email protected] Contact is a free, quarterly magazine for families of Editorial Board: Contact magazine was founded in 1998 children and young people with cancer. Contact aims Managing Editor – Prof Sue Ablett by The Lisa Thaxter Trust and CCLG. to reduce the sense of isolation many families feel Editor – Claire Shinfield Contact address: following a diagnosis of childhood cancer. Medical Adviser – Dr Martin English CCLG, 3rd Floor Hearts of Oak House, Contact is produced by the CCLG in collaboration Jenny Baston – Nurse, Leeds 9 Princess Road West, Leicester LE1 6TH. with CCPA (formerly NACCPO). Jane Cope – Nurse, Cardiff Mike Francis – Parent, York Tel: 0116 249 4460 Fax: 0116 249 4470 The Children’s Cancer and Leukaemia Group Katherine Greenshields – Survivor, London Email: [email protected] Charity number: 286669 aims to improve the management of children Rachel Hollis – Nurse, Leeds with cancer and advance the knowledge and The contents of Contact are the copyright of the Lesley Ingram – Parent, Glasgow study of childhood malignancy. publishers. Articles may be reprinted without charge Anthea Martin – Survivor, London provided that credit is given to Contact magazine. The Childhood Cancer Parents Alliance is a Rachael Olley – Parent, CCPA A copy of any reprinted article should be sent to the parent-run organisation with the common Gayle Routledge – Parent, Stafford editor at the address above. aim of working together to support Patricia Smith – Parent, Ireland children and young adults with cancer and Gill Thaxter – Parent, Coulsdon Please let us know your thoughts and feedback their families. about Contact by emailing [email protected] 2 www.cclg.org.uk News in brief Contact’s Medical Adviser, Dr Martin English writes... Walking for childhood Make a checklist cancer It may not be too late to join us on Emily’s Big Walk in September so sign up for your nearest walk today! The 15 would advise any nervous flyers not It also worked for me when I went on national walks aim to raise the profile to do what I did. That is, to spend a my trip last week because for once I left of childhood cancer and funds for your long-haul flight reading the excellent time to check over my list of what to pack I local treatment centre and CCLG. An book The Checklist Manifesto: How to and I didn’t leave anything behind! I was ‘Olympic-style’ torch will be passed Get Things Right by Dr Atul Gawande. visiting the 15th International Symposium from walk to walk. For more information, He is an American surgeon who writes on Paediatric Neuro-Oncology in Toronto please visit our website: for the New Yorker magazine and has which was a fantastic meeting looking at www.emilysbigwalk.org.uk published other books on the wonders, the state of the art of diagnosis, treatment achievements and developments as and care for children’s brain tumours. well as dilemmas, difficulties and In the 12 years since I first attended this challenges in modern medicine. meeting I was struck by how much the digital information age has progressed. He demonstrates how it is possible From 2x2 slides in carousels and an to reduce errors in clinical situations abstract book to everything in Powerpoint by using checklists to make sure that and a memory stick with all the abstracts everything is happening as it should. on it followed by the ability to sit in a For example, by introducing a checklist local coffee shop after the presentation of things to note before a patient is and find the articles referenced in the anaesthetised for surgery, before the talks on Google. Laboratory techniques operation starts and when the operation New website for survivors are progressing just as fast and one finishes it has proved possible to reduce A national support group for childhood keynote speaker described how a complications of surgery, and indeed and adolescent survivors has now researcher in his lab had been able to fatalities, in surgical settings in all areas launched its website: do in five months what had previously from very resource-poor nations to first- www.survivors-4-survivors.org.uk.