CCLG Contact Magazine Issue 78 Spring 2018

SPRING 2018 • ISSUE 78 • New beginningsA helping hand for families of children and young people with cancerC“ ameron was diagnosed with A budding catering leukaemia when he was just entrepreneur 16 months old. His only symptom was a rash but quick actions by our GP Cath Reilly, mum of Cameron, 25, who was meant he was referred straight to hospital diagnosed with leukaemia in the 1990s, remembers for tests. Instead of jetting off to our when he was first diagnosed and how he is now beach holiday, we ended up on a children’s expanding his new catering venture. cancer ward in Manchester! Shell-shocked, I remember a mum on the ward saying Cameron to me: ‘Don’t worry, I’ve been where with his stall you are now’. of goodies! Cameron needed radiotherapy and Cameron with his mum chemotherapy with a long treatment plan but, unfortunately, he relapsed. INSIDE A new way of using common Moving on after He needed a bone marrow transplant drugs to fight cancer cancer treatment but Manchester only did transplants from THIS related donors at that time. Cameron Page 4 Page 5 had no siblings so there was nothing ISSUE: more that could be done. Meanwhile, we had moved to Bristol which actually ended up being the best thing we ever did. Pioneering treatment used at Bristol enabled Cameron to have bone marrow donated from someone not related, which ultimately saved Cameron’s life. Cameron has no memory of his treatment but only that his mum and dad were always there with him. I thought at the time how hard it must be for families of teenagers who are diagnosed with cancer as they are far more aware of what is happening. (...continued on page 2)

2 Contact Issue 78: New beginnings for two months to New Zealand which was Editor’s note an incredible adventure for us both. Cover story continued... Claire Shinfield Cameron’s illness has affected the family Email: [email protected] did recover, but was left with some in lots of different ways but we don’t allowside effects, particularly epilepsy which it to take over our world. My husband and S“ pring is finally in the air; it’s the firstwas diagnosed at 13 years old. This has I wanted more children but it took a few Contact issue of the year, 41 yearslong-term implications such as being years before we reached an even keel and, since CCLG was founded, and theunable to drive or live alone. After treatment by then, too much time had passed. But it launch of our new look for 2018. Therefinished, I found the focus changed from has given us the opportunity to focus on his have been a lot of ‘firsts’ recently so thisdoing anything to make Cameron survive needs and support him with his education issue is fittingly called ‘New Beginnings’.to then living and coping with side effects. and business plans. He has cousins closeWe now live in Lincolnshire but still travel by which made up for his lack of siblings. ‘Beginning’ is the point in time orback to Bristol for Cameron’s aftercare. He space where something starts, andlikes to go back as it is a place he always While we may never be free of the effects this happens every day when cancerremembers and is familiar with – he is very of having cancer, we want to be in control treatment finally finishes and lifepragmatic about it and never complains. of it rather than the other way round. resets. Without the familiarity of I believe in the power of positivity to deal hospital routine and staff, it can beCameron passed his GCSEs but realised and cope with the many challenges that a scary place to start from.further academic studies wouldn’t suit him. cancer can throw your way.He loves cooking and went to catering This issue is dedicated to hope:college but his epilepsy means that he isn’t Surrounding ourselves with like-minded in searching for better and kinderable to work in hotels or kitchens for safety people who are facing a similar journey treatments (p 4, 6-7); in lookingreasons. He decided to work from home has helped enormously to avoid the forward to new lives after treatmentand set up his own catering business called downward spiral of negative thoughts.” has finished (p 5, 9); in achieving‘Nearly Five Foot Cakes and Bakes’. dreams despite setbacks (p 1); and seeing new chapters open up whenHe applied for a monthly position at a local others close (p.8).farmers’ market and now bakes traditionalcakes to sell. It gives him independence, The power of positivity is not toconfidence and a purpose, and he loves be underestimated and this issuethe social interaction with all of his celebrates how doctors, scientists,loyal customers. He also does patients and families refuse to let cancervoluntary work and helps with teas take control by making the most ofand coffees at a heritage centre opportunities that come their way.for one day a week. This is, of course, easier said than done but I hope that the inspirational storiesMy husband and I regularly help Cameron’s delicious featured in this issue can help readers,him on the stall and our own bakes! even in the smallest of ways, findbusiness expertise has helped comfort during the darkest of times.him to think about other ways ofexpanding the business without Hope is also the basis of our newrelying too much on parent help. Strategic Plan. Our new ‘experts’ logo reflects our pioneering workWe have encouraged him to be as and encompasses our dedication andgrounded, normal and self-sufficient as he commitment to shaping a future wherecan be. Cameron and I went travelling all children and young people with cancer survive and live happy, healthy and independent lives.Contact is a free, quarterly magazine for families Editorial Board:of children and young people with cancer. Managing Editor – Ashley Gamble Katherine Ince – Survivor, LondonContact aims to reduce the sense of isolation many families feel following Editor – Claire Shinfield Dr Vikki Langford - Psychologist, Birminghama diagnosis of childhood cancer. Contact is produced by the CCLG in Medical Adviser – Dr Martin English Rebecca Mulholland - Psychologist, Sheffieldcollaboration with CCPA. Children’s Cancer and Leukaemia Group brings Medical Adviser – Dr Bob Phillips Rachael Olley – Parent, CCPAtogether childhood cancer professionals to ensure all children receive the Nursing Adviser – Rachel Hollis Gayle Routledge – Parent, Staffordbest possible treatment and care. The Childhood Cancer Parents Alliance Jenny Baston – Nurse, Leeds Samantha Schoolar – Survivor, Coventryis a parent-run organisation with the common aim of working together to Jane Cope – Nurse, Cardiff Leigh Shaw – Nurse, Southamptonsupport children and young adults with cancer and their families. Contact Helen Dickinson – Social Work Gill Thaxter – Parent, Coulsdonmagazine was founded in 1998 by The Lisa Thaxter Trust and CCLG. team, Leicester Helen Thomas – CLIC Sargent, London Mike Francis – Parent, York Nicky Webb – Nurse, East MidlandsThe contents of Contact are the copyright of the publishers. Articles may be reprinted Jane Icke – Parent, Derbywithout charge provided that credit is given to Contact magazine. A copy of anyreprinted article should be sent to the editor at the address above. Please let us CCLG Contact address: University of Leicester, Clinical Sciences Building,know your thoughts and feedback about Contact by emailing [email protected] Leicester Royal Infirmary, Leicester LE2 7LX. 0116 252 5858 Email: [email protected] www.cclg.org.uk ChildrensCLG CCLG_UK Registered charity number 286669www.cclg.org.uk

Issue 78: New beginnings Contact 3Medical adviser and issues needing different solutions News in brief and, whilst I hope that everything Contact’s medical works out well in the end, it probably Calls for urgent reform adviser, Dr Martin English won’t look like how I imagine it will in access to new cancer (Consultant Paediatric look. We will be able to influence drugs in children Oncologist at Birmingham change or different outcomes for some Children’s Hospital and things. Other things will be beyond our Organisations and charities such as CCLG CCLG member), writes... control. are urging the European Commission to open up children’s access to the latest cancerL ast week, I saw the first snowdrop It is important to recognise what can medicines by taking immediate action to and, worryingly for half past and cannot be changed or we will close a loophole that allows drug companies January, a daffodil nearly ready waste a lot of energy trying to stop to opt out of running clinical trials of new to bud. Today, it is cold and grey with the unstoppable. I have just finished cancer drugs in children, even when there sleet outside starting to settle on the reading Being Mortal by Atul Gawande is good evidence that the drug could work. ground. Once you are reading this, we which I was given for Christmas three [Source: Institute of Cancer Research] will be enjoying spring, and Easter will years ago but, for some reason, I not be too far away. My aim this year is wasn’t ready to read it until now. UK childhood cancer to have a good work-life balance and Dr Gawande explores the role of experts meet at CCLG’s keep up with the gardening so I can sit medicine in end of life care from both a annual meeting outside on warm evenings. professional and personal perspective. Towards the end, he describes three In January, more than 250 professionals met As the new cycle in my garden begins, ways that doctors (or any professional) in Leicester to share latest trial updates, best I am also taking my turn as our can recommend treatment: practice and pioneering research. At the department’s Clinical Lead again. Some meeting, CCLG launched its new strategy things are the same as when I last did • Paternalistic – do this, which includes providing leadership and it, other things are different; the role doctor knows best expertise for the treatment and care of all has moved on. In both situations at • Informative – here are the children and young people with cancer, no home and work, there is a new pros and cons of treatment A matter where they live or at what stage of beginning and I have plans versus treatment B. Choose their cancer journey. Read the full strategy and ideas about how the one you prefer. at www.cclg.org.uk/strategy to move through the • Interpretative – find out what year and what I will the patient’s wishes are and what NEW animation for siblings do. Some things I is really important to them and of a child with cancer can influence while then explain how the treatment other things are out options could best help them CCLG has released a new animation based of my control, for meet those wishes. on its popular ‘My brother or sister has example, adapting my cancer’ information resource for young gardening if the weather This has struck a chord with me and I children. Featuring colourful graphics and is wet or dry, hot or cold. am going to take time to find out what sound effects, it tells the story of Tom and my patients and families want rather Jess whose brother Ben is diagnosed with Similarly, I know that whatever happens cancer. Visit cclg.uk/2olt9ZI at work it won’t be the same as last than assuming it. Similarly, I year. There will be different problems will spend time finding out Forthcoming events what are the priorities our clinical team thinks are Family day for children living with most important for us a brain tumour to achieve and then 28 April, Wilderness Centre, Gloucestershire strive to meet them. A fun-packed day for the whole family and a chance to make new friends. For everyone who www.thebraintumourcharity.org finds themselves at a new beginning or a new point on Childhood Cancer Parents Alliance (CCPA) their journey, ask yourself what is members conference most important to you and your family. 15 June, Yarnfield Park Conference Then ask your specialist team how they Centre, Staffordshire can best help you to achieve that. Open to all CCPA member groups and childhood cancer sector charities and will be a day of learning, sharing and networking. Contact Rachael on 07982 426142 or email: [email protected] UK Childhood Cancer Conference 2018 22 June, Manchester A chance for parents and professionals to come together to find out about the latest research into childhood cancer, and discuss other key topics in paediatric oncology. www.childhoodcancerconference.org.uk www.cclg.org.uk

4 Contact Issue 78: New beginnings A new way of using common Dr Kyle drugs to fight cancerMatchett Dr Kyle Matchett, Cancer Research Scientist at Queen’s University, Belfast, explains his pioneering work on repurposing existing drugs to treat cancer.Last year, I presented my repurposing New drugs Drug repurposing work to parents, scientists and doctors at the 2017 Childhood Cancer Conference. Very expensive (average cost Less expensive (drug is already licensed) New therapies are urgently needed for many from start to finish is £1.8 billion) childhood cancers and I specifically work Quick (many complex steps already on acute myeloid leukaemia (AML). While Slow (can take up to 17 years been completed) outcomes for children with AML have from the lab to patient) improved, the main chemotherapy drugs Greater chance of success in clinical trials used have been around since the 1960s. Low productivity (if it gets to as already approved for original disease New drugs are needed that are both effective clinical trials, 1 in 15 chance against the cancer and produce fewer toxic of being approved) Safer (already licensed for use in patients side effects such as nausea and hair loss. with existing information on side effects)How are new drugs common soft tissue non-cancer tumour in cells representative of childhood AML. Ofusually developed? called ‘infantile hemangioma’. Propranolol the 38 effective drugs I found, 12 are already has been extremely effective, and now is the used to treat blood cancer, which showed my New cancer drugs are developed from main treatment for this condition. experiment had worked well! Another 12 drugs scratch. Scientists look for specific changes are commonly used to treat solid tumours, such in cancer cells that can often hold the key • ‘Aspirin’, used to treat pain and inflammation, as prostate and lung cancer. The remaining 14 to how they grow and spread. Chemical is now an agent to prevent blood clotting. drugs are completely new and have not been compounds are then designed to target this used to treat any cancer before, including change. If successful, these compounds are • ‘Bromocriptine’, used for Parkinson’s disease, childhood leukaemia. I am now studying made into drugs, and tested in a series of has been repurposed to treat diabetes. these seven drugs in a number of projects. clinical trials to show that the drug is safe, tolerable and has the desired anti-cancer • ‘Methotrexate’, a cancer drug, has had One example is Drug A, which I have found to effect. The drug then proceeds to licensing effective outcomes in the treatment of be effective in childhood leukaemia cells at low and approval. This process has produced psoriasis and arthritis. concentrations, but it has no effect in normal most of the drugs we use today. However, cells, suggesting it could be both effective and this approach is expensive, time consuming My research safe. My work is now focused on understanding and the number of drugs approved is low. how one particular Drug A works, the genes it My work is focused on developing new affects and testing it in cells that more closelyA new approach - drugs for childhood AML using this mirror the childhood cancer. My ultimate aim isdrug repurposing approach. In one example, I screened to progress this drug, or another repurposing a collection of nearly 800 approved drugs candidate, to clinical trials in the future. These challenges have sparked the emergence of a new approach to developing A collection of 38 This important research was drugs, known as ‘drug repurposing’. Drug funded by a project grant from repurposing means finding new uses for nearly 800 effective drugs Little Princess Trust and CCLG. drugs that are already approved and licensed found for other health conditions. Drug repurposing approved drugs has had a major impact on clinical practice, screened and with many exciting laboratory studies recently reported, it seems this approach 12 The conference was a fantastic opportunity to will only gather further momentum. commonly used meet many amazing people, however, it was 12 to treat solid meeting parents which was the greatestExamples of repurposing tumours privilege – people who have lost so much and already used yet give so much. As I arrived home, I hugged • ‘Propranolol’, used to treat angina and blood my one-year-old son that little bit tighter, and pressure, has been repurposed to treat a to treat blood resolved again to make the greatest difference I can in childhood cancer.” cancer 14 drkylematchett Projects completely launched to new drugs study 7 of these new drugswww.cclg.org.uk

Issue 78: New beginnings Contact 5 Moving on after cancer treatmentMattea Austin Ex-patients Mattea Austin and Annie Copley share their experiences of life after cancer and how they are looking forward to the next chapters in their lives.L“ ast week, I had my last paediatric in circles around the pond outside as I my epilepsy. A nurse named Louise oncology appointment. I can go back if I want to see my waited for the doctor to call my name. was at my last appointment, as consultant in the future, but I won’t get any more appointments in the post. well as being there at my very first It was a significant moment in my life. Recently, I was moved to the appointment. I was diagnosed with acute lymphoblastic leukaemia (ALL) in adult outpatients ward, but 1997 when I was 17 months old. I spent over two years on treatment, I still had the same It was sad to say goodbye including three weeks in a coma, but I don’t remember any of this. doctor. This was very to Louise as I have Since then, I’ve been going back for different from the I still keep known her for nearly appointments. I can remember the paediatric ward. my Hickman all of my life, and it waiting room on the paediatric ward The waiting room was strange to say was my familiar playground, with all was large, clean goodbye as this the toys spread across the carpet, books stacked on the shelves and and full of chairs. line in a is the life I have cartoon characters covering the walls. There were no box known since I was I used to watch the colourful fish swim books or toys 17 months old. But covering the floor, I’m looking forward to and loads of other moving on. I feel so lucky people waited alongside to have come out of the other me for their doctors. end of this process and I still have my Hickman line in a box in my bedroom At my last appointment, we discussed to remind me of that.” every problem I have had in the past By Mattea and problems I have now, includingT“ his year, I will have lived 14 years 2. “Don’t be lonely, higher risk of difficulties later on in – that’s half my life – leukaemia- be independent” life but I can assume that I’ll be alive free! I’m so pleased to tell you and as healthy as can be because I that there’s life beyond the pain and I didn’t know anyone who had gone take the precautions: I balance my heartache, beyond cancer, that can through leukaemia twice and a bone food, I exercise steadily and I act be meaningful and worth it - hooray! marrow transplant like I had but now on the advice from my after-care Looking back at my own experience, I there are websites, charities and appointments. My ambition is to live have three messages to help recovery communities made up of people like to an old age, feeling happy and after cancer: you and me, who have been through healthy - and I wish that for you too. similar treatments, with just as many Onwards and upwards!” 1. “It’s okay to be okay” shocking and triumphant stories to share. If you’re feeling isolated, you can By Annie Cancer is part of your story but now get involved – you don’t have you’re on the next page. You don’t to be alone. have so many consultations, blood tests or scans, so embrace this time 3. “Look after you and to live life how you choose to. Believe your future” the doctors when they say you can eat brie, hang out with your best friend I still take each day as it comes and who has a cold, go on holiday with I still pinch myself when I make long- your family – because you can! term plans for my future. Unlike most other people my age, my body is at www.cclg.org.uk

6 Contact Issue 78: New beginnings BACK TO BASICSNew approaches to treatment of childhood cancers Professor John Anderson, Professor of Experimental Oncology and Honorary Consultant Oncologist at UCL Institute of Child Health and Great Ormond Street Hospital, London, explains the latest developments in treatment for childhood cancers. “The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air” J.R.R. Tolkien, The Lord of the Rings (1954) Professor refinements in the choice of One is the remarkable technological John chemotherapy drugs to tackle more developments that allows for rapid commonly diagnosed cancers, such DNA sequencing of cancer samples, Anderson as leukaemia and neuroblastoma, and and the other is the emergence of these have led to decreases in the cancer immunotherapy.Tolkien most probably didn’t have numbers of patients who relapse.the world of cancer treatments in Using DNA sequencing tomind when describing the sea change Sadly, relapse remains a devastating give personalised medicinefacing the inhabitants of Middle reality for many families in the UKEarth. However, many of us involved every year. It is for this group of DNA is effectively a code, a copy ofin treating children with cancer such patients that relapse, and those that which is held in every cell of the bodyas doctors and researchers will be have a poor success rate with first that instructs the cell how to behaveaware that breakthroughs in the line therapies (for example, a very and perform its essential functions.understanding of cancer are leading aggressive brain tumour called ato major changes in the way that we pontine glioma and rare soft tissue When a cancer develops, it is becauseapproach cancer therapy. tumours such as rhabdomyosarcoma) of changes in the code within a cell that a completely new approach to called a mutation. These mutationsThe mainstay of treatment of a treatment is urgently needed. are what makes the cancer cell makenewly-diagnosed child has not copies of itself, and to grow in anchanged significantly over the Amongst many advances, uncontrolled way.last 20 years. There have been two areas have had a particularly dramatic and Traditional chemotherapy drugs speedy translation into new work by killing all cells that are therapies within the last ten growing uncontrollably but this years, and are now being can also mean that healthy cells evaluated in clinical trials. are affected which is why patients can experience side effects such as hair loss.www.cclg.org.uk

Issue 78: New beginnings Contact 7By DNA sequencing a patient’s body. If it detects a new substance that developed for other childhoodtumour, we can find out what the main it doesn’t recognise, it raises an alarm cancers including solid tumours.mutations are driving that patient’s and sends white blood cells to attack For example, antibodies are partcancer growth. This information can it. This happens all the time when we of standard therapy for somehelp to suggest drugs that might catch colds, viruses and infections. patients with neuroblastoma andkill that patient’s specific cancer. myeloid leukaemia.This approach is called precision One of the biggest changes inmedicine (sometimes called cancer therapy is the emergence Future developmentspersonalised medicine). of immunotherapy as a way of mimicking this process so that One of the challenges in the comingIt is important to check whether cancer cells can be attacked years is to use new technologies suchprecision medicine approaches by boosting or manipulating a as DNA sequencing to identify whichactually improve survival in children patient’s own immune system. patients will benefit, and which formsby testing them in clinical trials: of immunotherapy to develop, and The most dramatic success using to work out how they might work in• A trial called eSMART is being this treatment has been seen in combination with more conventional run throughout Europe for children treating children with acute treatments such as chemotherapy. with relapsed cancers lymphoblastic leukaemia (ALL). Progress is rapid compared to• A trial called BIOMEDE is specifically A type of immunotherapy called historical speed in the development for children with brain stem glioma CAR-T cell therapy has led to of new treatments, but still many but in this case is precision medicine complete responses in some patients years of effort and well-designed of newly diagnosed patients. with relapsed disease that is now clinical trials by cancer experts are resistant to chemotherapy. It comes needed so that more children willEmergence of immunotherapy in many forms and is now being survive with kinder treatments toas a new cancer treatment reduce the burden of treatment for children with cancer.Your immune system keeps track of allthe substances normally found in yourWhat is CAR-T cell therapy? The patient’s T-cells areThe immune system works by recognising and attacking a particular collectedsubstance that does not belong in the body. It does this by findingproteins on the surface of foreign cells, called antigens. T-cells (a type of Artificial receptorimmune cell) have receptors that attach to foreign antigens helping to (chimeric antigentrigger the immune system to destroy the foreign cells. Just as every lock receptor or CAR)can only be opened with the right key, each foreign antigen has a unique is added to the cellsreceptor that is able to bind to it. Cancer cells also have antigens but the in the lab to makeimmune system has a harder time recognising them as foreign. CAR-T cellsIf your immune cells (T-cells) do not have the right receptorto find a cancer cell’s antigen, they cannot attach to it to These cellskill the cancer cell. are given back to the patientCAR-T cell therapy is where the patient’s own T-cells are changed in boosting theirthe lab by adding an artificial receptor to the cells (called a chimeric immune systemantigen receptor or CAR) to make CAR-T cells. These are then givenback to the patient boosting the patient’s immune system to identify thecancer cells and help destroy them. Different cancers will have differentantigens so each CAR receptor is made for a specific cancer’s antigensuch as in the case of acute lymphoblastic leukaemia. www.cclg.org.uk

8 Contact Issue 78: New beginningsHow has surgery improvedfor childhood cancer?Claire Jackson, Consultant Paediatric Surgeonat Addenbrooke’s Hospital in Cambridge, talksthrough advances in surgery for children andyoung people with cancer.Why is surgery used in on the patient after surgery can be improved pain-killing) requirement with earliercancer treatment? by changing surgical techniques to give recovery and discharge. The criteria for smaller wounds and scars resulting in less what is suited to laparoscopic surgery isSurgery is one of the main types of cancer medication afterwards, quicker recovery under active debate amongst surgeonstreatment used by doctors, and involves times and less risk of infection. For example: to ensure that the important principlesremoving tissue from the body. This can of oncology surgery are maintained.be done for many different reasons, for Inserting a central lineexample, to: Saving the ovary for girls with an Central lines were traditionally inserted ovarian cyst (ovary-saving surgery)• Diagnose the type of cancer and how using a small open operation. Many fast it is growing (grade) by removing surgeons now place this ‘percutaneously’ – In the past, most girls with a tumour in some tissue from the tumour (a biopsy). a needle-like puncture of the skin – which the ovary would have an open operation• Remove all or as much of the tumour makes the scar slightly smaller but, more and have the whole ovary removed. Better as possible importantly, reduces the risk of line infection imaging (often MRI scan) and greater• Control symptoms such as removing which is one of our biggest concerns for awareness, including using a clear MDT excess fluid in the brain as a result of patients who are immune-compromised approach, have allowed surgeons to a brain tumour due to chemotherapy. begin to offer those patients with a benign• Reconstruct part of the body such as tumour a ‘laparoscopic cystectomy’ a leg or eye prosthesis for bone and Biopsies (removing the cyst not the whole ovary). eye cancer patients This preserves as much ovarian tissue as• Insert a device called a ‘central line’ so Samples used to be taken during an open possible and patients can, of course, that other cancer treatments such as operation. In many cases, a tissue sample still become pregnant even if they only chemotherapy can be given to the patient can now be taken using an ultrasound have one ovary. scan guided core biopsy. This means that Surgery isn’t used for patients have a smaller operation and cancers such as leukaemia, recover more quickly whilst still getting lymphoma or if the cancer enough tissue to make an accurate has spread (apart from diagnosis. In some centres, this procedure inserting a central line). is done by a surgeon whilst in others it is by an interventional radiologist. This is because cancer cells will be present throughout Saving part of the kidney for the body through the blood Wilms’ tumour patients stream or lymphatic system (nephron-saving surgery) and will not be in one place to operate on. There are now clear criteria for which Other treatments will be patients are suitable for nephron-sparing more suitable. surgery. The aim is to preserve as much functional kidney tissue as possible to lastWhat has changed over the 70 plus years ahead of our patients.the years? Laparoscopic or ‘keyhole’ surgeryThe aim of many changes has been to lookat how the physical and emotional impact Most tumour surgery in the UK is only able to be safely achieved by an open operationwww.cclg.org.uk but, in some instances, the tumour is suitable for laparoscopic or keyhole surgery. This means that the patient has a smaller scar therefore less pain, less morphine (or other

Issue 78: New beginnings Contact 9Starting a new life in CanadaDr Vicky Forster, Cancer Research Scientist and survivorof childhood leukaemia, describes her life-changing year of2017 and her excitement at starting a new life in Canada.On 28 January 2017, I that are innovative and have the We all finished the very last potential to create positive change supported experiment of a research in the world, giving them a platform each otherproject on the long-term side including doing a TED talk at one in preparing foreffects of methotrexate treatment at of two big, annual conferences. our TED talks viaNewcastle University. On 1 February, numerous late night practices andwith only two suitcases of my things, My idea for my TED talk hugs. On the morning of the talk,I landed at Toronto Pearson airport was that we need to do I was very nervous but managedin Canada. I thought that this would to get through it and had manybe as hectic as things more research into positive comments afterwards. Thewould get in 2017, but the after effects talk isn’t up yet on TED.com, butlittle did I know that of cancer I hope they select it to go up atit was a sign of treatment and some point in the future.things to come for also involveone of the most survivors I spent the rest of the year exploringtiring, yet exciting as much as my new home and the surroundingyears of my life! possible to areas and, of course, getting stuck make sure we into my new job. I’m really happyI moved to Toronto to be part of a large researchfor my dream job as research the late community and fantastic lab group.a postdoctoral research effects that are We focus on a cancer predispositionassociate at The Hospital for Sick important to them. disorder called CMMRD, whichChildren – a fantastic hospital with means that people get multiplean attached 21-storey research Only around 40 of these fellowships types of cancer during childhoodtower, focusing on all aspects of are awarded annually, so I knew my and rarely reach adulthood becausechild health. I was excited to start chances were small but, amazingly, they cannot repair their DNAmy position investigating childhood I was selected! effectively when it is damaged. Itcancer and, thankfully, had a couple is thankfully extremely rare, but theof weeks to settle into the rather After several dress rehearsals over children who do have it urgently a number of months, I flew out to need better treatments. I’m really cold Toronto winter before Tanzania in August to spend two glad I moved here and can’t wait starting work. This time weeks getting to know my fellows to see what 2018 brings! was mainly spent class and to give my talk at the getting some TED Global Conference. The whole www.drvickyforster.com suitable winter experience was exhilarating, and vickyyyf clothes (my coat completely exhausting at the has a ‘lower limit’ same time. of -32C!) and getting used to As part of the fellowship the subtle cultural program, I got to meet my new differences, such as the ‘family’ of TED fellows, hundreds of completely inspiring individuals;extreme cost of cheese in Canada artists, activists, engineers, medicalcompared to the UK! doctors, writers and fellow scientists.Before I left the UK, I applied for aTED fellowship. These are awardedtwice a year to people with ideas www.cclg.org.uk

10 Contact Issue 78: New beginningsBecoming a childhood cancernurse after losing my sonTammie Shaw, mum of Kyle who sadly died of neuroblastoma in 2009,explains how she is determined to give something back by looking afterother children facing cancer.B“ ack in 2006, I was a single mum right age. A CT scan was booked for I would become a paediatric oncology of two beautiful children; a son the following day. I had to give up nurse; I wanted to give something called Kyle, 6, and daughter college and work to care for my son; all back and help these children have the most comfortable journey through thisBobbie-Jade, 3. I was suffering with I could think of was that big C word. horrendous time that no child should have to go through.depression, not working and being the I am now a wife and mother to twosole parent made me feel very low. Kyle had the scan which showed a more children: Tayla, 5, Tyler, 3, and Bobbie-Jade is now 15 years old. TheirSo, I thought I needed to pull myself large mass and was then moved to brother Kyle would be turning 18 years old in August. His little brother andtogether and decided to go back to Birmingham Children’s Hospital where sister never got to meet him, but we are always talking about him and howwork part time. I’d always wanted to be more tests confirmed that my little brave he was.a midwife, so I enrolled onto an access boy had neuroblastoma; it was in his I am doing the health course again which I will complete. I once made ato health course at college. bones and liver. He went through promise to a little boy years ago that mummy will become a nurse and he 15 months of treatment told me that, once I was a nurse, I could do his bloods and flush his line andKyle had not been including high-dose look after him on my own. And that is one promise I am going to keep. Iwell on and off for I once made chemotherapy with want my kids to be proud of me.”a while; he’d been stem cell rescue,complaining of a promise to a surgery andstomach ache little boy years radiotherapy.and a high Kyle smiled histemperature; ago that mummy way through it nosometimes the will become matter what waspain was so bad thrown at him.that he would a nurse Kyle was NED (nocollapse. I took himto the GP and even evidence of disease)A&E, sometimes 2-3 times from January 2008 and wea week for three months. All they could finally try and live our liveskept saying was that he had swollen as normally as possible, but the chanceglands or he was constipated. But three of relapse was extremely high.weeks after I started college, Kyle had Kyle relapsed in April 2008 butan ultrasound then, the following day, treatment was making him too illwe received a call from the hospital so he had oral chemo to try andasking us to go in that afternoon. I control the cancer. Over timeknew something wasn’t right because it was obvious that it was nothey wanted to see us so quickly. longer working. Kyle passed away in October 2009.When we got to the hospital, thedoctor was already waiting for us, While Kyle was in and out ofand she explained that the ultrasound the hospital, I used to watch theshowed that Kyle’s liver was enlarged nurses and see how amazing theyand positioned too far over. She were with Kyle and other poorlyexplained that this could be a severe children. I decided after seeinginfection or there was a 1% chance it them that this was what I was goingcould be cancer, but Kyle wasn’t the to do no matter how long it took me.www.cclg.org.uk

Issue 78: New beginnings Contact 11 ONEONONE We feature quotes from parents whose child has finished treatment for a brain tumour. They share how their child’s illness has given them a new outlook and perspective on life. Jane, mum of Amy Julie, “You realise your happiness actually mum of George doesn’t depend on anything other than thepeople who matter to you. You become sure of “I don’t need to book a holiday that, and that makes you more sure about the to the Maldives to be happy. decisions you make in life and the I can appreciate just even sitting reasons you’re making them. down to breakfast with my boys or That’s a good thing.” taking them for a day out. We sit there and say “Isn’t this lovely? We’ve come out to a freezing cold beach – but we got here!” Rachel, mum of Phoebe Julie, mum of George “When your child has cancer, you “It does change your priorities. I see can’t help but realise what matters in other people sometimes, getting really life and how much we complain about stressed out, they’ve got young children things that are just mildly inconvenient. and still working full time because they’ve It makes you realise how fragile life is got a massive mortgage. I look at them and so to make the best of what you and I think ‘You’ve got your priorities wrong’. But you can’t say that to somebody and have while you have it. I think only it’s not something you feel until maybe the experience of going through you’ve been through something like this. something similar to this could It does bring everything home to give you that. I don’t think you that the money, house and anybody could tell you.” the stuff doesn’t matter.”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 anyback issues, please contact the Editor (address page 2). Details of key articles in previous editions are listed on the web at www.cclg.org.ukPrevious themes:ABOUT RESEARCH CHEMOTHERAPY EMPLOYMENT MEDIA AND OVERCOMING SCHOOL LIFE ANDIssue 69 / Dec 2015 Issue 65 / Winter 2014 Issue 42 / March 2009 COMMUNICATION CHALLENGES CANCER Issue 58 / March 2013 Issue 61 / Winter 2013 Issue 73 / Winter 2016ACHIEVEMENT COMMUNICATION EMPOWERMENTIssue 57 / Dec 2012 Issue 76 / Sept 2017 Issue 53 / Dec 2011 MOVING ON PARENTS AND CARERS SUPPORT NETWORKS Issue 62 / March 2014 Issue 59 / June 2013 Issue 56 / Sept 2012ACROSS THE WORLD COPING STRATEGIES ENJOYING LIFEIssue 77 / Dec 2017 Issue 37 / Dec 2007 Issue 70 / March 2016 MOVING ON PLAY/ENJOYMENT SURGERY AND CHANGES Issue 35 / June 2007 Issue 44 / Sept 2009AWARENESS DEALING WITH FAMILY AND FRIENDS Issue 41 / Dec 2008Issue 64 / Sept 2014 DIAGNOSIS Issue 46 / March 2010 PROGRESS TESTS AND SCANS Issue 68 / Sept 2015 NETWORKING Issue 60 / Sept 2013 Issue 67 / June 2015BEST OF CONTACT GOOD IDEAS Issue 38 / March 2008Issue 50 / March 2011 DIAGNOSIS Issue 48 / Sept 2010 RADIOTHERAPY TRANSITION Issue 47 / June 2010 NORMALITY Issue 40 / Sept 2008 Issue 49 / Dec 2010BLOOD IDENTITY Issue 55 / June 2012Issue 63 / June 2014 EATING AND Issue 52 / Sept 2011 REHABILITATION TREATMENT NUTRITION NOW AND THEN Issue 45 / Dec 2009 Issue 54 / March 2012BODY IMAGE Issue 75 / June 2017 ISOLATION Issue 72 / Sept 2016Issue 74 / March 2017 Issue 51 / June 2011 RELAPSE & REMISSION EMOTIONS NUTRITION Issue 36 / Sept 2007CELEBRATION Issue 43 / June 2009 KEEPING ACTIVE Issue 39 / June 2008Issue 50 / March 2011 Issue 71 / June 2016 www.cclg.org.uk

A helping hand for families of children and Next issue due: Summer 2018young people with cancer Theme: Cost of Cancer Share your story... if you would like to share your story in Contact or have an idea for a theme for us to cover, please let us know. Email us at [email protected] DAY CARE APPOINTMENTS ...what to bring and how to prepare Kaleb Ells, 17, is currently undergoing treatment for a brain tumour. He shares some valuable tips on coping with day care appointments.Day care medical appointments because the day care may last a long time. after as appointments can often be reallycan be tough. Whether they are Also, bear in mind that lots of hospital TVs tiring, so you might want to go straightfor treatment, tests or something don’t always work, so don’t rely on those home. Instead, the treat could be ‘banked’else, they can be an emotional to provide entertainment! for another day.and physical challenge. Some ideas: Having something to look forward to canPreparing for these appointments can really help in the lead up to and during daybe a really useful way of making a difficult • A book – one that you can read or have care, and provide something to talk aboutexperience a little more manageable. read to you. Bring something that’s easy before and during the day. Also, it’s a greatIt’s always a good idea to bring someone to read and, potentially, a book you’re way to make the experience more positive,with you to the appointment such as familiar with. It can be comforting during as, rather than the day just being about thefamily or friends. the day care to have something familiar, appointment, it can also be about the treat. like a favourite story. Equally, it’s a great opportunity to windGetting there down from the stress of an appointment, • A phone or tablet – being able to watch and can be a chance to process some ofTry to plan how you’ll get to the or listen to a programme or some music the emotion.appointment. Doing this before the day gives something else to focus on, andcan help make the appointment day less requires very little energy, so this canstressful, because you’ve got one less task be particularly good for day care.to deal with. It could be simply checkingthe route on Google Maps, or buying train • Headphones – hospital wards are oftentickets in advance. really loud, so headphones are useful to make sure you can actually hear what’sIf possible, leave early as this can help playing on a phone or tablet.remove some stress from the journey, andit means that you’re not thrust into all the • Cards/board games – these be veryintensity of the appointment as soon as you relaxing and it can help pass the time.arrive at the hospital. If you’re driving, it’s a Day care can be long and dull, so it’sgood idea to leave lots of time to park and good to have something to engage with.to make your way to the hospital. • Talking – having a chat with others canWhat to bring be a great way to pass the time, and it can be relaxing too.This can vary depending on age. It’s alwaysa good idea to bring a variety of things, Afterwards Plan something nice to do after the day care like watching a favourite film or takeaway. It doesn’t have to be straightManaging day care appointments is about finding out what worksfor you not about anyone else. I hope this gives you a good start! www.cclg.org.uk ChildrensCLG CCLG_UK University of Leicester, Clinical Sciences Building, Leicester Royal Infirmary, Leicester LE2 7LX. 0116 252 5858 • Email: [email protected] • Registered charity number 286669