Brain Tumour Support Service Newsletter

Paediatric brain tumours

The Paediatric Cancer Registry is one of only a new national childhood registries in the world.

By Dr Rob Campbell and Dr Martin Wood, Brisbane Clinical Neuroscience Centre

Tumours of the brain and spinal cord do not discriminate by age and whilst they occur much less commonly in children than in adults, they cause more deaths than any other cancer under the age of 20.

Since the Lady Cilento Children’s Hospital opened in 2014, approximately 80 children have been diagnosed and treated for various tumours of the brain, spinal cord, and nervous system. 40 families each year hear the words that every parent dreads, “your child has a tumour”. For that patient and family, their life irreversibly changes in the blink of an eye. Through the network of hospitals managed by Children’s Health Queensland, based primarily at the Lady Cilento Children’s Hospital at South Brisbane as well as the Townsville Hospital and the Gold Coast University Hospital, children receive state-of-the-art treatment and care.

Brain tumours commonly present with symptoms including headaches, loss of balance, early morning vomiting and other symptoms, depending upon the exact location of the tumour. Symptoms often develop over a six to eight week period. Unfortunately, this serious diagnosis is often not considered at the beginning of each child’s illness and children often visit their family doctor and emergency department clinics on more than one occasion before the diagnosis is finally made. With less than 40 diagnoses per year it is most unlikely that the average general practitioner will ever see a child with a tumour in his career.

Tumours may also present with drawn out symptoms of visual failure, growth impairment, or the new onset of a squint as the only symptom of the tumour’s presence. Some tumours present with epilepsy and may be difficult to diagnose without high definition magnetic resonance imaging of the brain.

A team of trained children’s neurosurgeons and paediatric neuro-oncologists work together in providing care and coordinating the delivery of service for every case in Queensland.

In almost all cases the first treatment is surgical, followed by chemotherapy and, depending upon the child’s age and the subtype classification of the tumour, radiation treatment may also be used. Some tumours such as the juvenile pilocytic astrocytoma of the cerebellum have a very good prognosis with survival prediction approaching 95 per cent at 20 years. Unfortunately, other tumours follow a very malignant course and ultimately prove fatal in a much shorter timeframe.

Tumours are classified by their identification of their cell type as seen under the microscope. Typically, tumours are either astrocytoma, ependymoma, medulloblastoma, or other rarer disease types. Tumours may affect the pituitary gland, the pineal gland, and the optic nerves and are named accordingly based upon their site of origin.

Over the last 10 to 20 years scientific discovery has led to the recent recognition of molecular subtype description of tumours which better predicts both prognosis and responsiveness to various treatment protocols. It is highly likely that in the future the molecular description of the tumour will become much more important in decision management about treatment options than the older microscopic classification system. All such molecular diagnostic services are available through the pathology departments of our treating hospital network.

Tumours of the spinal cord occur much less frequently than brain tumours, although the disease type may be identical to what is seen in the brain itself the anatomy of the spinal cord determines the speed at which symptoms develop predominantly relating to pain and partial or complete paralysis of legs, arms and bladder function. Sometimes emergency surgery is required to relieve the pressure on the tumour and a second operation may then be scheduled to maximise tumour removal prior to chemotherapy treatment.

Tumours of the nervous system, most commonly seen in the setting of neurofibromatosis type I, are almost always benign and rarely require radical surgery other than for relief of functional disability or cosmetic concern.

Occasionally the brain and spinal cord may be directly affected by tumours of the head and neck region or of other abdominal organs spreading to the brain and spinal cord either by metastasis or by direct invasion. Again neurosurgical management may be required to achieve disease control, followed by systemic chemotherapy and or radiotherapy.

The neuro-oncology service at the Lady Cilento Children’s Hospital works in partnership with numerous Queensland and international University researchers and have contributed to numerous landmark discoveries and publications around the world within the scientific literature. All children diagnosed with brain or spinal cord disease will be considered for entry into a clinical protocol trial to ensure that their treatment is equal to care delivered in a global network of children’s brain tumour services. The small numbers of cases seen in Queensland (and in Australia) are pooled together to form a much more powerful group of patients around the world to determine the effectiveness of treatment and measure the clinical outcome both in terms of disease control, recurrence rate, and quality of life outcome measures. Queenslanders should be proud of the global contributions of the clinicians caring for children and families affected by brain tumours in the 21st-century.

The diagnosis of a brain tumour in a child 100 years ago was one of, if not the most, formidable diseases diagnosed by children’s specialists. Advances in treatment – diagnostic imaging, surgical techniques, chemotherapy and radiation treatment saves many children and now offers others a much more positive outlook. Whilst the disease remains formidable with challenges that cannot be cured by surgery alone, multidisciplinary team management ensures that every child and their family receive the best scientific-based treatment available.

For more information, please discuss your specific questions with your treating specialist. Your general practitioner will be kept advised and updated throughout your child’s treatment and your general practitioner would be welcome to make direct contact with your child’s neurosurgeon or paediatric oncologist if any specific questions are raised.

Canines and childhood cancer

By Amy McCullough, PhD, American Humane Association, Molly Jenkins, MSW, American Humane Association; Ashleigh Ruehrdanz, MPH, American Humane Association

While the incidence of childhood cancer has increased slightly over the past 20 years, mortality rates have drastically decreased, with five-year survivorship currently near 83 per cent.
canine and childhood cancer

However, the psychological impact the disease and treatment have on childhood cancer patients and their families remains a concern. Childhood cancer diagnoses not only affect patients, but may also have serious implications for their parents/guardians, siblings, and relatives. Children with cancer and their families not only cope with physical challenges, but are also prone to psychosocial and behavioural issues including stress and anxiety, trauma, depression, loneliness, and strain in their significant relationships (Fotiadou, et al. 2008; Norberg & Boman 2008; Jenkins, et al. 2012).

Animal-assisted interventions (AAI) include both animal-assisted therapy (AAT) and animal-assisted activities (AAA), and hold promise for children with cancer and their families. Not only are AAIs accessible and affordable, but research also suggests that animals can provide numerous benefits for people from all ages and walks of life (Nimer & Lundahl 2007; Endenburg & van Lith 2011). Reported benefits of AAIs include reduced stress and anxiety; decreased blood pressure and heart rate; distraction from worry or pain; unconditional support and acceptance; increased opportunities for physical touch; improved social skills that lead to healthy relationships; enhanced self-esteem; and increased motivation to actively participate in treatment (Fine 2010; Friedmann, Son, & Tsai 2010; McCardle, et al. 2011).

From a paediatric standpoint, Vagnoli, et al. (2013) found that children who had a therapy dog present during a venipuncture procedure exhibited less distress, stress and anxiety than those children who did not have a dog present during the same procedure. Urbanski and Lazenby (2012) found that paediatric populations could benefit in myriad ways from the introduction of animal-facilitated therapy in hospital settings, including helping to normalise the hospital environment, improving their mood, increasing their socialisation and decreasing their fears. Multiple studies examining therapy dogs’ impacts on hospitalised children have discovered that the dogs help make the hospital feel more ‘like home,’ in part because dogs are familiar and more similar to children’s typical environments (Bardill & Hutchinson 1997, p. 20; Wu, et al. 2002).

Moreover, in a recent study examining the reactions of paediatric patients, their families, and medical staff to the introduction and incorporation of AAAs into a child’s hospital in Italy, Caprilli and Messeri (2006) found that children reported their mood to be pleasurable due to the therapy dog’s presence. Additionally, Marcus, Blazek-O’Neill and Kopar (2013) found that the introduction of therapy dogs in an adult cancer infusion center resulted in patients feeling that they were a positive addition to their treatment and determined that therapy dogs may be a valuable tool for addressing a variety of cancer-related symptoms by reducing stress and increasing relaxation.

While many studies have documented the benefits of AAIs, the majority of these findings have largely been anecdotal and the field has consistently struggled with developing and conducting rigorous research (Johnson, Odendaal & Meadows 2002; Kazdin 2010). Many argue that this lack of evidence-based research has hindered the ability of AAIs to be recognised as viable treatment options for people in need, particularly by those in the research, funding, and healthcare fields (Palley, O’Rourke, & Niemi 2010). Although therapy dog programs are common in children’s hospitals throughout the United States, existing evidence concerning the effectiveness of AAIs in paediatric oncology settings is very limited. Additionally, there is a general lack of scientific research on how AAIs may impact the therapy animals.

Overall, there are crucial gaps that must be filled if AAIs are to be considered feasible, effective, safe and ethical modes of adjunctive treatment. American Humane is currently implementing a study called, ‘Canines and Childhood Cancer’, which has the unique potential of advancing our knowledge in the fields of paediatric oncology and AAI through rigorous and ground breaking research. But, perhaps even more importantly, this study may improve childhood cancer treatment by providing valuable evidence to support an adjunctive treatment modality aimed at providing the comfort of a therapy dog to children and families. Findings are anticipated in mid-2017. For more information on this study, visit

Children and brain tumours: common concerns and challenges for parents

Helen Wilson, Social Worker and Nicola Morgan, Senior Communications Coordinator – Redkite.

Anyone who has experienced the shock of a brain tumour diagnosis will understand the disruptions to day-to-day life and the emotional challenges that follow.

When a child is diagnosed, the issues faced by their family are quite different to those presented by adult brain tumours, and also by other childhood cancers. Parents who have connected with Redkite’s support team tell us that help from family, friends and the community, and connection with others who have had similar experiences, are crucial in helping them stay strong and hopeful.

Children with cancer tend to have longer hospital admissions than adults. This is particularly the case if they are having chemotherapy, which is likely to be more intensive than it is for adults. A carer is required to be with the child most of the time during treatment and rehabilitation, which often means at least one parent taking extended time off work.

This reduction in income often comes at a time when costs associated with treatment start to rise (for example travel and accommodation for those not living near a major hospital and medical expenses). If there are other children in the family, often one will stay at home to care for them, while the other stays with the sick child. This can affect family functioning and place pressure on the parents’ relationship.

Treatment, hospitalisation and the after-effects of the experience all impact on a child’s development. Children who have finished treatment may have difficulty meeting milestones, and this may continue into adolescence and young adulthood. These ‘late effects’ tend to become apparent about 12 -24 months after treatment finishes. Often it is not until a normal developmental stage is reached that a delay becomes evident. As such, the child may acquire skills at a slower rate than his or her peers.

The side effects of surgery may also impact on the child’s behaviour and temperament. Reconnecting with ‘the child within’ may take time and patience. Expressive therapies such as art and music, and investment in quiet family time, may help this process. Of course, every situation is unique. Some children will require minimal (or no) treatment and some will have no discernible after-effects.

Parents also talk about the worry of recurrence, the high levels of care required for long periods, and the ways community resources become increasingly limited as time passes. A common theme in many conversations with parents is: ‘It’s never over.’ The fear of recurrence combined with ongoing physical issues and related emotions become a new reality for many families.

A clear message from families is that a strong support system is vital for child and family health. The most effective support networks involve extended family, friends, local community and professional services, all contributing in some way to assist the family. Support from peers is also highly valued. Organisations such as Cancer Council Queensland, Camp Quality, CanTeen, Brainchild and Redkite provide different opportunities for children and young people, as well as their parents and grandparents, to link with others who understand what it’s like to live with a childhood brain tumour. Families tell us it helps to know that your feelings are natural and normal – and that you’re not alone with these challenges.

Redkite is a national organisation offering support to children and young people (24 and under) with cancer, and those close to them. Our services include financial assistance, education and career support, and information and counselling.

Returning to school after tumour treatment

By Karen Prain, Brainchild Foundation

It is a scenario familiar to many of us – your child has been ill, diagnosed with a brain or spinal cord tumour and is now either in the process of undergoing treatment or has completed treatment.

Their treatment may consist of surgery, radiation therapy, chemotherapy or a combination of the three. The whole experience is a blur of anxiety and uncertainty. Although this time is chaotic, there is a network of health care providers and charitable organisations available to you during hospital visits and stays. They can provide a wealth of information and support. But what happens when your child is able to return home and get back to their normal life? What about going back to school?

Returning to school following treatment is a huge milestone. Some children even return to school during the course of their treatment. Either way, it is important to consider that your child is likely to look and behave differently to the way they did before their diagnosis and treatment. We all know that unfortunately, brain and spinal cord tumour treatments come at a cost. The side effects of treatment can be many and varied, and the severity of those side effects can also range considerably between children. When a child returns to school following diagnosis and treatment, side effects may be evident in the following ways:

  • Changes in physical appearance. There can be numerous changes in physical appearance, however the most common are hair loss and weight gain or loss. Other physical changes may include the presence of central lines, dressings, nasogastric tubes, wheelchairs and any other treatment related items. Even subtle changes to a child’s skin tone or posture can contribute to the changes in appearance that other children will notice upon a diagnosed child’s return to school.
  • Physical limitations. Physical limitations following treatment are common, and they can range in nature and severity. Mobility can be affected, and can vary from subtle reductions in co-ordination, to profound loss of mobility requiring a wheelchair. Fatigue is common, regardless of how mobility has been affected. Hearing loss or loss of vision can also be subtle or severe and can have a large impact both socially and academically upon returning to school. Eating habits may also pose a physical limitation for some children, particularly those who still require nasogastric feeds upon their return to school. The presence of nausea and/or vomiting will also influence a child’s eating habits.
  • Cognitive changes. It is common for children to experience changes to their cognitive function, particularly if they have been treated with radiation therapy. Again, the degree ranges between children, however, it is common for them to experience a decrease in their attention span, inability to concentrate and poor memory. This will obviously have a great impact on learning, as these issues hinder the ability for children to retain new knowledge. It is also possible they may forget things they learnt prior to diagnosis and treatment.

It is clear that for children diagnosed with brain and spinal cord tumours, returning to school can pose many challenges. All of the issues mentioned (and this is by no means an exhaustive list), have the potential to reduce a child’s confidence and self-esteem. This, in turn, can erode their motivation and willingness to ‘have a go’. If we want their return to school to be a positive experience, it is vital that parents and caregivers take a little time to plan ahead.

It is important to discuss returning to school with your child. Ask them how they feel about it. What are they looking forward to? What are their concerns? Some children will be eager to get back to school and won’t express too much concern over any of the changes that have affected them. If this is the case, share their enthusiasm. For those children who are not so keen, it is important to acknowledge both their positive and negative views. Areas of concern must be discussed rationally, always with a view to resolving the perceived problem or fear. Some children may resist returning to school, therefore it is important to discuss plans with them early, and allow them to be involved with that planning. Liaise with your child’s medical team, allied health staff, and school, and involve your child in discussions where appropriate.

It is essential to keep your child’s school informed of their progress during treatment, so they are also able to plan for their return. Children will often have different and/or greater needs than before their diagnosis, and schools need time to organise the appropriate supports. You should also consider requesting peers to be informed of your child’s condition. This goes a long way in reducing negative attention upon their return. Other children will be more respectful and considerate if they have some understanding of what your child has been through.

It is important for families to be prepared for these challenges, and to seek support in working through them. Medical and allied health services are vital to supporting a child’s positive recovery post treatment. Charitable organisations also play a role in assisting children, and families can connect with them via health care providers. Recovery following treatment takes time, often years, and children may not fully regain the physical or psychological function they had prior. It is important to recognise your child’s abilities and strengths following treatment, and nurture them. This will boost your child’s confidence and self-esteem and, in turn increase their motivation. Recovery is about supporting children to be all that they can be, regardless of their limitations.

Brainchild Foundation Educational Scholarships
The Brainchild Foundation supports children diagnosed with brain and spinal cord tumours. One of the ways we support diagnosed children is through our Educational Scholarship Program. This program provides private tutoring support, and all children with a confirmed brain or spinal cord tumour diagnosis are eligible to apply. Further information is available by emailing:

Caring for yourself when caring for someone with a brain tumour

By Sylvia Burns, Cancer Support Specialist

As a partner or caregiver, you too experience the impact of brain tumours.

When someone close to you is moving through a brain tumour diagnosis, you may find yourself struggling to manage appointments, understanding treatment and effects, as well as confronting fears for you and your loved one’s present and future wellbeing.

Many caregivers find themselves closely involved in discussions with treatment teams and shouldering additional responsibilities, particularly when treatment is ongoing and debilitating or the tumour is no longer responding to treatment. Roles and responsibilities often change and you may face relationship pressures and the reactions and concerns of other family members.

Caring for someone you love can be a rich and rewarding experience. It can also be demanding, draining and isolating. With your partner or loved one facing so many challenges, it can be natural to put your own feelings and needs on hold. While this can be okay in the short term, it can lead to exhaustion and health problems over time. Making sure you care for yourself and have the support you need, will ensure that you can be there to care for your loved one throughout the journey, however long it takes.

Tips for caring for yourself

    • Work with difficult feelings – Feeling stressed, down, fearful, on edge or irritable is normal. Caregivers can experience a rollercoaster of emotions in the face of brain tumours and the extra demands of providing care and support to someone close. Feelings of resentment and anger may arise and lead to shame and guilt. Accepting these feelings as a natural response to the difficulties you are facing can help you let go and move forward.
      Find someone you can confide in – Talking problems over with a partner or trusted friend can help lighten the load and make sense of your feelings. A carer support group, professional counsellor or spiritual support are other useful sources of information and support. Reaching out is a survival skill that can help you maintain perspective and balance in difficult times.
    • Stay connected to the outside world – The demands of caring can mean that other roles and interests slip away. Keeping up some of your usual activities can provide a refreshing break and maintain a sense of yourself in the caring relationship.
    • Invest in your physical health and wellbeing – Eating well and exercising regularly can help you to cope with stress and maintain your energy and manage fatigue.
      Make time to lighten up and relax – This may seem frivolous or a luxury when you are extra busy and pushed for time. However, taking a mini-break just to step out into the garden and breathe, or 20 minutes to read or listen to uplifting music, are small steps that prevent the build-up of stress and frustration.
    • Be kind and have reasonable expectations of yourself – It is normal to feel a little frayed around the edges with the extra demands and concerns you are shouldering. Be aware of the tendency to expect too much of yourself and make time to reflect on your achievements. Prioritising what is most important in each day and letting go of previous standards, can help you stay flexible and in touch with what is needed now. Practicing saying no and handing over tasks to someone else are small gifts to both yourself and others.
    • Gather the information you need – Having information about brain tumours, treatments and what you might expect can help you feel prepared. Take the time to work out what you need to know and discuss this with the treatment team. Ensure that you have contact names and numbers of key health professionals and services and keep these in one place. Knowing where to find information when you need it can help you feel less stressed and more in control.
    • Ask for and accept help and support – People generally find it hard to accept or ask for help. Some feel it is their role to shoulder all the responsibility, others feel guilty or are concerned about burdening friends and family who already have busy lives. Generally, however, people who care about you feel better if they can be useful in some way. Make a list of all the things that would help you and show it to people when they ask what they can do. It can also help to find out about available health and community services in your area from your GP, or treatment team. Formal respite options can also give both you and your loved one a welcome break from each other.
    • Think of your wellbeing as a bank account – The demands of caregiving can mean that your resources become drained and your account moves into the red. Looking after yourself is like making a deposit and can help keep your account balanced. Keep an eye on your stress levels and take action if you feel overwhelmed and drained.

Looking after yourself is neither selfish or a luxury. It is vital if you are to stay well and able to keep on providing good quality care for your loved ones.

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