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ALL NEWS FOR PEOPLE WITH ACUTE LYMPHOBLASTIC LEUKAEMIA (ALL) & THEIR FAMILIES JANUARY 2015 TAYLOR AND JASMINE SHARE A SPECIAL BOND Four year-old Taylor Garrett is insistent – she never wants to have her hair cut again. In fact, she wants to grow it as long as Rapunzel’s! And yet, back in July, when her friend, Jasmine Robinson, 7, had her head shaved by her dad, Taylor had him shave her hair off too. At the time, the two girls’ hair was falling out for the first time during treatment for ALL. Taylor and Jasmine were diagnosed in May. They met after both were airlifted to Sydney for treatment at the same hospital and have remained firm friends since, despite their age difference and their homes being far away from each other. Taylor and her mum, Rachelle Mintern, are from Woolgoolga, north of Coffs Harbour, and Jasmine’s parents, Vanessa and Matt, and brother Blake, live in Canberra. Taylor and Jasmine spent more than five months together in Sydney undergoing the same intensive treatment regimen and staying at the same accommodation centre. “They just hit it off,” explained Jasmine’s mum, Vanessa. “Jasmine enjoys mothering Taylor and looking after her. They have a special bond because they are going through the same thing, with the normality of having a friend. “They play like normal kids, but they play doctors a lot and role play all the things that happen to them during the day, like putting in cannulas,” Vanessa said. The girls, who are only two weeks apart in their treatment regimen, now spend four days in Sydney followed by 10 days at home. “Now we’re coming and going from home, sometimes we’ll go to Sydney half a day earlier, so Taylor and Jasmine can catch up,” said Taylor’s mum, Rachelle. “Their friendship is a distraction and helps them forget what’s happening. They comfort each other and don’t feel like it’s only them going through this. Continued on page 6... IN THIS ISSUE Study shows dramatic results ................ 2 What causes ALL? ................................... 2 Eleven Qs: Dr Gökbuget.......................... 3 Dylan’s dream ........................................ 4/5 Readership survey ................................... 7 Eight Seasons book................................. 8 Both diagnosed in May 2014, Jasmine Robinson and Taylor Garrett have a special bond from going through the same experiences together. 1800 620 420 www.leukaemia.org.au 1 ALL STUDY SHOWS DRAMATIC RESULTS An investigational immunotherapy, CTL019 – a type of chimeric antigen receptor (CAR) therapy, genetically engineers patients’ immune T-cells and reintroduces them into the body to kill cancer cells. Willcox, director of the Cancer Immunology and Immunotherapy Centre in Birmingham, UK. “It’s not clear whether this represents a ‘true’ cure, or a bridge to other potential cures such as stem cell transplants,” Professor Willcox said. A study published recently in the New England Journal of Medicine showed that 90% of children and adults with ALL achieved complete remission after receiving this experimental, personalised cellular therapy. Researchers at the Perelman School of Medicine at the University of Pennsylvania, led by Dr Carl June*, and the Children’s Hospital of Philadelphia (CHOP), led by Dr Stephan Grupp, reported that 27 of the first 30 people on the study achieved complete remission Dr Carl June. after being treated with genetically engineered T-cells. Dr Grupp said the results were “unprecedented”. “The patients who participated in these trials had relapsed as many as four times, including 60% whose cancers came back even after stem cell transplants. Their cancers were so aggressive they had no treatment options left,” he said. However, although the findings were “dramatic”, the therapy was complex to perform, had serious side-effects and raised several unanswered questions according to Professor Ben The treatment involves taking T-cells from patients and genetically engineering them to produce a modified protein known as a chimeric antigen receptor. This receptor is designed to bind to a second protein, known as CD19, found on the surface of immune cells called B-cells, out of which several types of leukaemia can develop. Once the modified T-cells are infused back into the patient they rapidly multiply, producing an army of tumour-killing cells that set about attacking the cancer. The U.S. Food and Drug Administration has granted Breakthrough Therapy designation for clinical trials of this approach to treat paediatric and adult ALL patients who have not responded to, or who have relapsed after, treatment with conventional therapies. * Dr June was an international speaker at the Leukaemia Foundationsponsored new Directions in Leukaemia Research 2014 meeting on the Sunshine Coast. WHAT CAUSES ALL? ALL, which makes up around 10% of all leukaemias, is a rare cancer and the causes of ALL remain unknown. A national epidemiological study, called The Forgotten Cancers Project, is being conducted by the Cancer Council of Victoria to understand the roles of genes, lifestyle and early life environment as causes of less commonly occurring cancers, such as ALL. The study is collecting a broad range of health and lifestyle information from people diagnosed with ALL and the other blood cancers. The same sort of information also will be collected from a family member of each participant. It is a case-control study because information from people diagnosed with ALL who take part will be compared with information from people who are not affected by this disease. The aim being to identify any differences between the people with ALL and the people without, to see whether the differences may be associated with development of cancer. The study is seeking a total of 30,000 participants (15,000 people with cancer + 15,000 people without cancer). People who were 18 years or older when diagnosed can register to take part in the research. The Leukaemia Foundation supports this research project and encourages people with ALL to take part. According to the Foundation’s Head of Support Services, Anthony Steele, it is important for blood cancers to be well represented in the study. “If we can learn the risk factors of ALL, either genetic or lifestyle, we may be able to prevent it occurring in future generations,” Anthony said. “We believe it is in the best interests of those with ALL to take part in this study. The more people who take part, the stronger the research will be.” To take part in the study, phone 1800 068 289, email [email protected] or visit www.forgottencancers.com.au. CANCER FOLLOW-UP MISSED Many childhood cancer survivors miss out on critical follow-up care as adults. The recent Clinical Oncology Society of Australia’s annual scientific meeting was told 40% of young adults didn’t attend surveillance medical appointments and 60% didn’t understand the risks of being treated for cancer as a child. Assoc. Professor Richard Cohn, director of the survivorship program at the Kids Cancer Centre (Sydney’s Children’s Hospital), 2 said a survey of 270 survivors found barriers to accessing followup care included hidden financial costs of childcare or missing work. Others were unaware of late-effects clinics. He said it was possible to identify patients who should receive intense follow-up screening, based on a higher risk of secondary cancers after radiation, and infertility or cardiac problems based on the medication they received. Read more about late-effects on page 8. Leukaemia Foundation ALL News – January 2015 Research Matters ELEVEN QUESTIONS: DR NICOLA GÖKBUGET Dr Nicola Gökbuget (pictured) was an international speaker at the New Directions in Leukaemia Research 2014 meeting on the Sunshine Coast earlier this year, which was hosted by the Leukaemia Foundation. Dr Gökbuget is head of the Study Center of the Department for Internal Medicine II, Hematology/Oncology at the University Hospital in Frankfurt, Germany. For more than 20 years she has served as Coordinator of the German Multicenter Study Group for Adult Acute Lymphoblastic Leukemia (GMALL). Her scientific interest focuses on clinical research in adult ALL including diagnosis, therapy, risk stratified treatment, late effects, quality of life, management of relapsed/ resistant disease and evaluation of new drugs. 1. What is the GMALL? This is a national study group in Germany with 140 participating hospitals. Founded 30 years ago, the GMALL’s aim is optimising the treatment of ALL. The Group has conducted many clinical trials for adult ALL and has the world’s largest database of adult ALL patients, having collected data from more than 6000 patients. ALL is a rare disease and many hospitals treat very few patients. The Group has educational study group meetings, provides treatment protocols, is in close contact with all the hospitals and is available to answer questions about treatment or complicated patients. The Group also learns from these problems and further develops our protocols. 2. Why hasn’t the improvement in survival rates for people with adult ALL kept pace with those for paediatric ALL? The outcome of ALL is strictly age dependent, probably because ALL is cured mainly by intensive chemotherapy, which is not as easily tolerated in adult patients who have more complications and treatment delays, etc. The dose intensity that can be achieved in children is not similar in adults and it decreases with age. More adult patients cannot receive the treatment and there is more mortality during chemotherapy. As well, with increasing age, some prognostic factors increase, further contributing to the poor outcome of older patients. Most adult study groups, like ours, use paediatric-based protocols, with modifications to make them tolerable which has significantly improved the outcome. 3. In Australia, cancer registries report on cancer incidence and cancer deaths. Explain your experience working with the cancer registry in Germany? We don’t have a really good National Cancer Registry in Germany. Each German state has a registry but the cancer information collected is superficial and doesn’t fit with the data you need to know for leukaemia, so you cannot really analyse this information, which is why our group created our own registry. We try to register all adult ALL patients in our participating hospitals. Of course, we have no information on patients who do not reach these hospitals. 4. How has working with more comprehensive cancer data improved your ability to research blood cancers? We started our registry four years ago and what is important is the information we are building up on patients who do not fulfil the entry criteria for clinical trials. Patients with a previous cancer or co-morbidities are not eligible for trials, but all the entry criteria information is included on the registry. Very interesting data on subgroups will arise from it, e.g., ALL as a secondary cancer, after breast cancer, is increasing. 5. Is having a comprehensive cancer registry vital for any country seriously dedicated to curing blood cancers? Of course the cancer registry is important – to have an overview on the whole healthcare system in a country. But blood cancers are not considered in enough detail in many of these registries. I recommend haematologists collaborate closely with the people defining the cancer registries, particularly the documentation. In the state of Hesse, where I live, the documentation used for the cancer registry was found unsuitable for ALL. So, one has to work with the registry to get appropriate information for the different diseases because each cancer is very different, and only if we modify the registries in this way, will they be helpful for us. Continued on page 7... 1800 620 420 www.leukaemia.org.au 3 My Journey DYLAN’S DREAM – TO PLAY COMPETITIVE HOCKEY AGAIN A My name is Dylan Turner and I am a 15 year-old boy living with cancer. I was diagnosed with high-risk ALL in May 2013, when I had to stop going to school every day, move 200km from Bunbury to Perth and endure more medical procedures than most people have to in a lifetime. Before I got sick I was an aspiring athlete who was chosen to represent Western Australia. After I was diagnosed all that changed. I started playing field hockey with the Marist Hockey Club in 2011. After one training session I loved it. During my first season I met Tristan Clemons, a goalkeeper for the Australian men’s hockey team, the Kookaburras, and later learnt a lot from him in a goalkeeping coaching clinic session he taught in Bunbury. By 2012, my second season, I was asked to play in the men’s A grade competition. After playing in the WA State Championships I was invited to try out for the WA State Under 13 Boy’s Hockey squad. Not only was I thrilled to be selected, I was excited to begin my dream of being a state-level hockey goalkeeper. In October 2012, our squad of 20 players went to Nowra (NSW) to compete in the Australian National Hockey Championships. cracking jokes and using me as friendly punching bag was now giving me hugs and repeatedly asking me how I was feeling. He looked worried. I remember my sister looked like she had been crying. My sister-in-law was also there with us. Both my parents were busy signing papers with the doctors and the nurses. The reality of my situation hit hard when I was told I had to be close to PMH at all times because I was a high-risk (of infection) patient. That meant we had to live in Perth in a temporary home for the next 10 months and I spent many weeks in hospital. My mum gave up work as a full-time teacher to be my carer. One of the hardest things was that my dad had to continue working in Bunbury and could only come to Perth on the weekends. I hated when he had to leave because I really missed him. We would spend lots of time on the phone talking to him. After six months in Perth the doctors let me go home to Bunbury for two nights only. Cancer is very scary because I could die and I had never thought of that before. I was only 13 when I was diagnosed and I also developed diabetes, so had to learn to live with that too. In the first month, I came very close to dying when my body couldn’t fight a bacterium. The head doctor at PMH told me all this nine months later and I was stunned. When I got diagnosed I didn’t know what cancer was, but then I saw mum and dad’s reaction and I knew it wasn’t good. They were shocked and upset. The paediatric doctor at the Emergency Department at the Bunbury hospital told I often ask my us blood tests showed I mum why did I had ALL. We didn’t know An action shot of Dylan Turner in 2012, prior to his diagnosis with ALL. get cancer? She what it was. The doctor doesn’t have the told us to drive straight to the Princess Margaret Hospital (PMH) answer. I don’t know why I got it but I won’t let it get in the way in Perth. of my dream. I want to beat this and get fit enough to play hockey and one day play for Australia. Driving back to our house to pack, I asked my mum what ALL was. She hesitated before she told me it was cancer. I didn’t The chemotherapy puts poison in my body and it’s hard really know what cancer was and I didn’t believe the doctor, but I to imagine how anything could be worse than throwing up knew I felt too unwell to argue. I had been sick for over a week. everything you eat, having constant headaches, losing the ability to taste my food, being in the unlucky percentage of I asked Mum how long we were going to be staying in Perth and people who develop steroid induced diabetes and having up to she said to pack for a week, so that’s all I packed for. It was a six insulin shots day and night. But the worst of all was when my very quiet trip to Perth. When Dad, Mum and I arrived at PMH hair started to fall out. I couldn’t hide it any longer, I was sick. I we sat in silence waiting for my older brother and sister to come used to wear a beanie all the time or a hat. and meet us in the waiting room. It was close to midnight when the staff took us straight to the oncology ward so the specialist I lost my confidence the more I got sick. I didn’t want to see doctors could see me. my friends because I was sure they would stare at me and be different around me. They had a normal life and I didn’t any Being in that hospital room was surreal. Everything was unfamiliar more. I did lose some of my friends because being so far away and I could tell this was serious. My brother, who is usually 4 Leukaemia Foundation ALL News – January 2015 N AND ONE DAY PLAY FOR AUSTRALIA they couldn’t just drop in to visit and most of the time I only wanted my family to be with me. My older brother, sister and sister-in-law always made hospital a happy, fun time filled with jokes, playing Monopoly and many other games. would drive up to stay with us on the weekend. I missed my home but with most of my family in Perth, that is where my home was to me. In March 2014, my oncologist gave me permission to move back to Bunbury and continue my oral chemotherapy treatment and steroids at home. It made me extremely happy to finally go home. For so long, this was the day I had been waiting for. I am in long-term maintenance now and still have 21 months of treatment to go. The side-effects of having cancer continued with the doctors deciding to put a feeding tube down my throat because I had lost over 20% of my original body weight. I couldn’t hide this one with a hat or beanie, I just had to put on a brave face and get used to people staring at me. I was very pale from the constant chemotherapy, steroids, painkillers and the many blood transfusions, platelets and haemoglobins. In between all this I had an operation to have my port inserted in my chest to help access my veins and for intravenous treatments. I’ve had numerous lumbar punctures and a few bone marrow aspirations (biopsies) too. Every 28 days we travel back to PMH to have intravenous chemotherapy, lumbar punctures, physical examinations and any other treatment that needs to happen according to the protocol and I’ve had an intravenous immunoglobulin transfusion to boost my immunity. As long as I’m not neutropenic, or sore from the steroids, I can go to school, but I have to be careful I’m not in contact with people who are unwell or sick because my immunity is low. I also have to stay out of the sun because I can easily get skin cancer. I can’t swim in the river and I can’t go near pets or animals. I couldn’t go to (my) school anymore, I didn’t want to be involved in the school on the ward because I didn’t feel well and I didn’t want to be tutored or do my schooling through Schools of Isolated and Distance Dylan, just after his diagnosis, Education like my family encouraged me to with Kookaburras’ goalie and My mum helps to tutor me at home and I have do. Tristan Clemons contacted my parents mentor, Tristan Clemons. managed to keep up with most of my set and offered to tutor me. When I was well homework assignments. enough he would sometimes do some light training with me. I My oncologist is very supportive of my dream to eventually play appreciated these times but I just wanted to go back to how my hockey competitively again. I haven’t played a game of hockey life was before and I wanted to be with my mates again. I was since I was diagnosed, but I really want to. often depressed and afraid. We lived in a Leukaemia Foundation unit in Bassendean for 10 months. My dad tried to work in Bunbury during the week and I now realise, I am a survivor after all I have been through. No one knows what my future holds or what I am capable of, but I have my dream of regaining my fitness, being a goalkeeper again, playing for WA and ultimately the Kookaburras. DYLAN DESCRIBES OUR PATIENT AND FAMILY ACCOMMODATION Excerpt from a piece of Dylan’s school assessment Dylan, second from the right, with his family, from left, sister-in-law, Lisa, Fran his mum, brother Aaron, sister Jerrilee, and dad, Glenn at Broome in September 2014. 1800 620 420 www.leukaemia.org.au “I am sitting in a wheelchair at the dining room table in my temporary home in Perth. My new home is a unit in Bassendean, 30 minutes from the hospital. The units are neat and tidy with well maintained gardens. It’s surprisingly quiet living here in this part of the city. My unit is surprisingly comfortable. It has an open plan kitchen, dining and lounge area looking out to an enclosed patio and outdoor living area. Fortunately, it has a good size TV that I can also play my games on. Mum brought her favourite Aztec carpets from Bunbury and they cover quite a bit of the floor. She also brought up a lot of board games and jigsaw puzzles. Most of my family is in Perth and wherever my family are is home to me.” 5 My Journey Continued from page 1 “They have become good friends and play really well together. Jasmine is the older sister role,” said Rachelle. “When we started making trips home, that’s when Taylor started worrying about her hair – asking ‘will my hair grow back?’ and ‘will it fall out again?’. She gets self conscious when she’s back in normal society. “But when she’s at the hospital, her hair doesn’t worry her so much. All the kids look the same, with puffy cheeks from steroids and no hair.” Jasmine, who’s in year one, hasn’t attended school much since her diagnosis but her teacher has sent her work and visited her twice at the hospital in Sydney. “She’s not behind but she’s not top of the class,” Vanessa explained. “I just want to get her better, and at the moment it’s hard with the steroids. Her emotions are all over the place. “But we’ve been pretty lucky with her treatment. She’s followed the textbook and other than four admissions for chemo, she spent three weeks in hospital when she got a lung infection, which was a bit of a setback. “She has amazed me. She is a headstrong little girl who has taken it all in her stride.” Soon after returning to Canberra, the Robinsons took part in the Light the Night walk and fundraised for the Leukaemia Foundation. Rachelle said Taylor had grown up a lot since her diagnosis. “What she takes in about others around her is more like an adult than a kid. She doesn’t open up as much to me as she does to my best friend Ashley – they have a close relationship. “Ashley had only just got to the U.S. when Taylor got sick. She cut short her planned two-year trip, moved back to Sydney and lives a five-minute walk from the hospital. She’s my support person, she’s always there,” said Rachelle. Jasmine Robinson at Light the Night in Canberra with her brother Blake, dad, Matt, and Vanessa, her mum. In early-2015, the girls move on to the maintenance stage of treatment, which is oral chemo and means they will only go to Sydney every three months for tests. Taylor is keen to go back to daycare and also to getting their dog, Indy Girl back home. “She’s just over 12 months old and we haven’t seen her since she went to stay at my mum’s at Wagga Wagga, but we’ve seen lots of photos and videos,” Rachelle said. She is looking forward to Taylor being healthy, to not seeing her upset and in pain, and to her having a normal childhood, going to the beach and to the park in the afternoons. Jasmine can’t wait to go back to jazz and hip hop dancing and swimming, which she used to do, and to taking up touch football which she was about to start before getting ALL. “I try not to look too far ahead and take one day at a time,” said Vanessa. “Looking back at the first few weeks, I can hardly remember them. I don’t know if I’ve had time to sit down and process it all and I probably won’t until maintenance starts at the end of January.” Vanessa said that when the girls are back at their respective homes, they message each other regularly to see how the other is going, talk on the phone and share photos. “We just get settled in, then we have to get up and go back to Sydney. Jasmine is tiring of the travel back and forth and I coax her by saying, ‘we’ll see Taylor’.” Vanessa said. Taylor Garrett at the beach with her mum, Rachelle Mintern. 6 Leukaemia Foundation ALL News – January 2015 Research Matters Continued from page 3 6. Explain the importance of a country having its own blood cancer bio-bank* and how this helps progress ALL research? Tissue banking is absolutely essential – it is the basis for any research. It is also important to have the fitting clinical data, e.g., diagnosis and follow-up information for the tissue that is banked. The best way is to combine the tissue bank and the clinical cancer registry. This is what our group is doing. We have a tissue bank and the registry, so we can identify subgroups of patients for research and create research programs. 7. You have been involved in the development of the German Consortium for Translational Cancer Research. What is translational research and why is it important? Translational research means actually passing on information more quickly from basic research into clinical research for the direct benefit of the patient. This is very important. Information on the biology of cancers is increasing tremendously and getting more complicated. An aim of this network is to find ways to better combine this data and get clinicians and basic researchers in closer collaboration, to close this gap between basic research and the clinical application of the results. A very good example of how this may work is in ALL, which has been biologically identified. Now ideas are coming up from the biology as to which treatment may be active in a patient. This consortium stands for all cancers and is based on biobanking clinical data. 8. How well funded is translational research compared to other forms of cancer research, and is this proportion of funding appropriate? Funding is never enough, and of course, it depends on the country. In Germany, we have a really large program now, so funding for translational research is quite good. What I would like to see is more funding for clinical research because clinical trials are tremendously expensive these days due to the bureaucracy and the rules, which need to be reviewed. For example, bone necrosis, which increases with more intensive chemotherapy and can lead to the need for artificial hips, can be a big problem, especially in young adults. Another problem is the development of secondary cancers in leukaemia survivors. We really need to follow-up patients on a regular basis for QOL and for late-effects, combined with a program to detect these late effects. To ensure our range of disease-specific ALL NEWSLETTER READERSHIP SURVEY newsletters, including ALL News, continues to meet the needs of people with blood cancer, the Leukaemia Foundation is conducting a national survey. We are seeking your feedback and encourage you to take part in the readership survey: http://surveymonkey.com/s/Newsletter_ Readership_Survey. ACUTE LYMPHOBLASTIC LEUKAEMIA NEWS CARING FOR PEOPLE WITH ACUTE LYMPHOBLASTIC LEUKAEMIA AND THEIR FAMILIES JULY 2014 LEUKAEMIA HURDLES NOW IN THE PAST FOR KATE Kate McLennan got a bike for her 8th birthday that she never learnt to ride. previously been in a room up a flight of stairs, was relocated to ground level. Not long after her birthday, Kate, now 19, started feeling tired and cranky. Her parents, Bronte and Tim, initially thought she had a virus, but she didn’t improve and she started bruising easily. After several trips to the GP she distinctly remembers the ambulance ride she had to a Brisbane hospital. “I didn’t enjoy going to school because I stood out, but I had no choice,” said Kate, who was in a wheelchair and still hooked to a nasal gastric tube. Blood tests showed Kate had ALL and she began treatment. She spent the first three weeks after her diagnosis in hospital, and over the next three years, her resilience and fortitude saw her overcome several major hurdles; the worst being a rare fungal infection. “It was everywhere, in my lungs and in my joints – shoulders, legs and elbows. I had to stop treatment and had lots of surgery to remove the fungal infection which was washed out of my joints,” explained Kate. “I was off school for quite a while.” During the six months Kate spent in hospital fighting this infection, her grade three teacher brought in a bucket of tadpoles to show her how a school project was progressing. And when Kate returned to school, her class, which had IN THIS ISSUE Young Bloods program ..................... 2 Finding new treatments .................... 3 Eleven Qs: Prof. Mullighan............ 4-5 Tobi’s an inspiration .......................... 7 Diary Dates ........................................ 8 “I had to learn to walk again and I had to learn to eat again too, because I was totally not interested in food. “Socialising was pretty difficult. One of my best friends before the illness was very sporty. Afterwards, I made a new group of friends who were the quieter kids. “In grades three to seven I was sick and recovering. I had to learn to deal with not being able to participate. During sports class, I’d sit and watch or go to the library. “The easiest transition was to high school, when I wasn’t visually sick.” Kate completed her course of treatment in 2005. The following year she had pins put in her left leg, which was shorter and bowing inwards, and her mum (a nurse) would lengthen the screws every night. Continued on page 6... 10. What are the most common late effects for people treated for ALL? Osteonecrosis is a problem. We also found fatigue in patients even five years after the diagnosis. We found a very limited number of secondary cancers, which is good news. Infertility and hormonal disturbances are a problem. There is a syndrome that patients complain about – a lack of concentration and cognitive problems – and the problem is that we don’t have a good test to measure it. There are very complicated and lengthy neurological tests but these are not done in daily practice. A test called DemTect, which was developed for the detection of dementia, is far too rough to identify a very limited restriction in cognition. That’s what we want to evaluate, but it is difficult to find an adequate test. 11. Is there consensus in Europe, or within Germany, on a best practice survivorship plan to monitor people for late effects and QOL after ALL treatment? There is certainly no consensus in Europe. In Germany, since everything done by our group is on ALL, of course there is a consensus. We want to follow up patients after one, two, and if possible, five years. But there is a problem of funding because identifying these patients is a lot of work and 1 there’s a logistical problem identifying their doctors who may move into private practice. What we also do, based on our previous projects, is set up internet-based information for our patients. Our study group has developed a patient card, which a patient can get at the end of their intensive treatment. This very small booklet compiles information on their treatment and issues, which can be referred to later by private practitioners, e.g., gynaecologists. The card is provided to all 140 hospitals to give to their patients. Kate McLennan with brother, Patrick, and her parents, Bronte and Tim, while holidaying together in late-2012. 1800 620 420 www.leukaemia.org.au 9. Based on your experience researching quality of life (QOL) in adults with ALL, what are their greatest unmet needs and are these needs consistent across the western world? Quality of life research can only be done in the context of national or large study groups, and due to the structure of our group, we could do this research. The result basically 1800 620 420 was that most of the patients – long-term survivors – had an overall quality of life similar to the normal population. Of course, the views of a cancer patient towards life are different to a person who has never had cancer, i.e., they don’t see so many problems in normal things as other people. I think QOL research, which is a more theoretical topic, has to be combined with the evaluation of late effects of therapy and disease because this is an increasing problem with ALL management. www.leukaemia.org.au * Australia has the Australasian Leukaemia & Lymphoma Tissue Bank. 7 Living Well TWO NEW CHAPTERS ENHANCE ‘EIGHT SEASONS’ Psychologist, Sandra Evans, wrote about her family’s journey with childhood leukaemia after her eldest daughter, Tahlia, was diagnosed with ALL in 2006, aged four. The book’s title, Eight Seasons, was chosen to reflect the two years Tahlia underwent treatment in Brisbane, and was published in 2010. Now Sandra has produced a second edition with two extra chapters that reflect issues that arise after treatment ends. “I felt the new chapters – 11 and 12 – were really important to include; to see that the journey does not just end when treatment stops,” Sandra said. “We were in survival mode when I wrote the first 10 chapters, and at the time we didn’t think about the late side-effects of chemo. “I wanted to talk about the importance of good follow-up and aftercare for children who have been treated for leukaemia. “It seems a lot of people drop out of the system when treatment finishes, the portacath is removed, and the danger period is over,” she said. “When the scheduled appointments reduce to annual reviews, many don’t go back to see an oncologist, to follow up their child’s development and to look out for signs of late side-effects. “From our experience with Tahlia, it seems best to deal with these early rather than ignoring them or hoping they’ll go away.” Tahlia is now 12 and eight years post treatment. She starts high school this year (2015) and “is doing beautifully” says Sandra. The family of four, including husband, Randall, and their other daughter, Lauren, lives in northern New South Wales. “We’re in a really good place now and Tahlia is becoming more confident in areas she found difficult. She’s gained not only academic confidence but also increased social confidence as a result of having her areas of difficulty supported.” Sandra also talks about the long-lasting effects that having a child with cancer has on parents, and that these continue well after treatment stops. “I talk about trauma and how much is unspoken by parents about this topic because the focus is on the child,” she explained. “We can put high anxiety symptoms down to being tired or overwhelmed, but as parents come out of survival mode and the dust starts to settle, trauma can bubble to the surface. “It’s important to recognise that any intense worry or anxiety is likely to be linked to the trauma of watching our children being exposed to extremely invasive and serious treatments. My message is not to pathologise such reactions, but to normalise them and to encourage parents to seek help and to share the experience with others. “Some parents become overprotective and worry about the safety of their children, and this can be even worse in fathers because men often are not as open to seeking help and talking about these issues. “I wrote Eight Seasons to normalise these feelings for other parents who are trying to make sense of some very intense emotions and the difficult reactions to what is essentially an abnormal event – a child with a life-threatening illness,” said Sandra. “I’ve had some beautiful responses to the book and get emails from parents who say ‘it’s like you’re describing my exact experience’. “Drugs like methotrexate have the Psychologist and author, Sandra Evans, with her daughter, Tahlia. potential to cause difficulties with learning and we felt we needed to Eight Seasons is available free from the Leukaemia Foundation. provide opportunities for Tahlia to overcome learning difficulties Call 1800 620 420 to order a copy. at school,” Sandra explained. Read more about Tahlia’s journey in the Spring 2011 issue “For several years we have sought tutoring and in-class support of ALL News which can be downloaded from the Leukaemia for Tahlia, and we’ve made the teaching staff aware that there are Foundation’s website: www.leukaemia.org.au. difficulties so they understand that she tires easily and that this is not laziness but related to her treatment. Some of the medications have affected Tahlia’s mathematics ability, visual and spatial awareness, and attention span. She has physical concerns too, that until recently affected her ability to play sport. Tahlia has avascular necrosis (bone death) – a result of high dose steroids. A piece of dead bone in her ankle has needed surgery, physio and follow-up. EDUCATION AND SUPPORT – DIARY DATES The 2015 program of education and support sessions was being finalised as this issue went to print. For the latest information, call 1800 620 420 or refer to the Education and Support Program Calendar at www.leukaemia.org.au. OUR VISION TO CURE AND MISSION TO CARE FOR YOU The Leukaemia Foundation is the peak body for blood cancer in Australia, funding research and providing free services to support people with leukaemia, lymphoma, myeloma and related blood disorders. Our free services include emotional support, accommodation, transportation and practical assistance. We also fund research into cures and better treatments. To find out more about how we can help you: Freecall 1800 620 420 Email: [email protected] Mail: GPO Box 9954 in your capital city Website: www.leukaemia.org.au We receive no ongoing government funding and rely on the continuous support of individuals and corporate partners to provide our services and to fund our National Research Program. Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.