Contact A helping hand for families of children and young people with cancer

Children’s Cancer and Leukaemia Group - www.cclg.org.uk

Autumn 2014 Issue 64: Awareness

Stephen Sutton was an extraordinary young man who made a transformational impact

on Teenage Cancer Trust, a charity dedicated to improving the quality of life and chances of survival of young people with cancer aged 13 to 24. Here’s a bit about Stephen’s Story in his own words, taken from an inspirational speech he gave at the O2 in January 2014:

“My name is Stephen, I’m 19 years old. Essentially, I’m just a normal kid. I went to high school as normal. I did county level athletics. I set my school’s Under-15 400m record. I played football for numerous teams including Walsall football club, and I also played cricket, rugby and basketball. I was a drummer in a local band and I was studying hard at school with the ambition of becoming a doctor.

I was feeling pretty content with my life. But then, unfortunately, three and a half years ago, aged 15, I was diagnosed with cancer. After six months of crippling symptoms I underwent surgery and got a 21 cm scar down my stomach and six months of chemotherapy which made me sick and tired. But then I was in remission, cancer free. Woo! However, that was short-lived and I found a lump behind my knee and my cancer had returned. I then underwent more surgery, so more cool scars – chicks dig scars so that’s alright – and 30 sessions of radiotherapy.

Again they thought I was in remission, cancer free, woo! But then again the cancer returned. At this point I then underwent more chemotherapy which made me even more sick and tired. But scan results showed that despite

all the treatment the tumours had continued to grow. So at this point they were discussing chopping off my left leg. Before they had the chance to do that however, the cancer had spread elsewhere – I’ve since had cancer in my groin, pelvis, back of my calf. And I’ve undergone more surgery, surgery, chemotherapy, surgery, surgery, surgery, chemotherapy and they’re discussing a potential amputation again. Phew.

As you can see, I’ve been through a lot these last couple of years. But, more significantly, I’ve learned a lot. I’ve learned to be as positive as possible. What I’ve

“My name is Stephen” Michelle Saxby from Teenage Cancer Trust talks about Stephen Sutton who became a national inspiration after comments on his Facebook page helped to raise awareness and funds for teenage cancer before he sadly died in May this year.

PAGE 5

Talia

PAGE 12

Tom

Stephen Sutton

Continued on page 2

22001144 IIss

#ChildhoodCancerAwarenessMonth

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found is a positive attitude leads to positive outcomes. I’ve learned not to feel sorry for myself either. Unfortunately, my disease has been described as incurable. I do not know how long I’ve got left to live because I haven’t asked – and that’s because I don’t see the point in measuring life in terms of time any more. I would rather measure it in terms of what I actually achieve. I’d rather measure it in terms of making a difference, which I think is a much more valid and pragmatic measure.”

“A positive attitude leads to positive outcomes.”

Stephen set out to raise £10,000 for Teenage Cancer Trust and his Justgiving page currently stands at £4.3 million.

Stephen’s Facebook page, ‘Stephen’s Story’, was already popular when Stephen posted his famous final thumbs-

up picture which went viral around the

world on 22 April. The page now has

1.3 million followers. The weeks that

followed were unprecedented and saw

many thousands of people motivated

to show their support for this incredible

young man and his positive attitude.

The media picked up Stephen’s Story

and ran regular updates on his situation.

Jason Manford supported Stephen on

social media, and was quickly followed

by other celebrities including Russell

Brand, Robbie Williams, Benedict

Cumberbatch, Cara Delevingne, and

Chris O’Dowd. The Prime Minister,

David Cameron, even made a private

visit to see Stephen in hospital.

Stephen’s health did seem to improve

briefly before he died on 14 May.

A vigil for Stephen was held at Lichfield

Cathedral and was attended by many

thousands of people including the

world’s media. Stephen has also been

awarded an MBE for his fundraising for Teenage Cancer Trust.

Siobhan Dunn, Chief Executive of Teenage Cancer Trust said, “Stephen was an exceptional young man and ambassador for Teenage Cancer Trust. He will be remembered for his incredible positivity by all who met or connected with him.”

Contact Issue 64: Awareness

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Contact is a free, quarterly magazine for families of children and young people with cancer. Contact aims to reduce the sense of isolation many families feel following a diagnosis of childhood cancer.

Contact is produced by the CCLG in collaboration with CCPA (formerly NACCPO).

The Children’s Cancer and Leukaemia Group aims to improve the management of children with cancer and advance the knowledge and study of childhood malignancy.

The Childhood Cancer Parents Alliance is a parent-run organisation with the common aim of working together to support children and young adults with cancer and their families.

Editorial Board:

Managing Editor – Ashley Gamble Editor – Claire Shinfield Medical Adviser – Dr Martin English Medical Adviser – Dr Bob Phillips Jenny Baston – Nurse, Leeds Jane Cope – Nurse, Cardiff Mike Francis – Parent, York Katherine Greenshields – Survivor, London Rachel Hollis – Nurse, Leeds Anthea Martin – Survivor, London Emma Nation-Dixon – Parent, London Rachael Olley – Parent, CCPA Gayle Routledge – Parent, Stafford Patricia Smith – Parent, Ireland Gill Thaxter – Parent, Coulsdon Paul Twocock – CLIC Sargent, London

Contact magazine was founded in 1998 by The Lisa Thaxter Trust and CCLG.

Contact address:CCLG, 3rd Floor Bosworth House, 9 Princess Road West, Leicester LE1 6TH.Tel: 0116 249 4460 Fax: 0116 249 4470 Email: cs349@le.ac.uk Charity number: 286669The contents of Contact are the copyright of the publishers. Articles may be reprinted without charge provided that credit is given to Contact magazine.A copy of any reprinted article should be sent to the editor at the address above. Please let us know your thoughts and feedback about Contact by emailing info@cclg.org.uk

www.cclg.org.uk

@CCLG_UK

Editor’s note... Gold is the colour for September to highlight Childhood Cancer Awareness Month and this issue has a sprinkle of gold dust to highlight this important annual event.

I’m sure we have all heard the incredible story of Stephen Sutton

who raised awareness and funds for teenage cancer when he posted the famous ‘thumbs up’ photo on Facebook earlier this year. He rightly appears as our front page story.

The power of parents to raise awareness, influence and change things for the better is shown by Sacha (pg 4), Kate and Simon (pg 10) and Corisande (pg 12) who have the dedication and commitment to achieve so much to help children, parents and families in the same situation.

As this issue demonstrates, we are all working towards the same awareness goals – to save lives through earlier diagnosis and to make life easier for families affected by childhood cancer.

Getting the message out there is crucial and there are local and national activities planned for this month (see pages 8-9) and lots of ways in which you can help – so start tweeting #ChildhoodCancerAwarenessMonth #CCAM today!

Claire Shinfield Email: cs349@le.ac.uk

“My name is Stephen” Continued from page 1

Stephen’s final thumbs-up photo

A part of lifeContact’s Medical Adviser, Dr Bob Phillips writes…

Hello! My name is Bob Phillips, and I work both as an academic at the University of York and

as a consultant in Leeds, as well as part-time taxi-driver/ironing-service/dog-walking/refereeing/Beavers-helper. I’m happy to be writing these short pieces for Contact magazine as it gives me a chance to think beyond the stuff of daily life.

For everyone reading this magazine, childhood cancer is a ‘given’. I’m betting that you can, without too much difficulty, run off a list of ten people that work at a children’s cancer unit, and you may be able to recall who breeds spiders, who is allergic to peanuts, and who denies having worn a sparkly mini-skirt, high heels, false nails and waterproof mascara in Oxford city centre in the 90s. Cancer is something that has been, or is, part of your life.

What awareness of childhood cancer can do for other people is for them to think ‘Maybe it’s cancer?’, when their child develops a lump, or has persisting headaches and vomits every morning. It’s got to be carefully balanced though, because not every lump is cancer, and not every morning headache is a brain tumour. As it is Childhood Cancer Awareness Month this September, we have a great spread of the different ways this is being approached on pages 8-9.

Awareness can also bring on its tails an explosion of generosity, as we saw with the internet sensation of Stephen Sutton who raised over £4 million (and counting). The work of CCLG and all of the other charities involved with promoting research, development and support in childhood

and adolescent cancer can only be undertaken by the selfless giving of so many people. Undertaking fundraising and volunteering can also be beneficial in its own right: there are over a dozen studies suggesting volunteers have better mental and physical health than those who don’t volunteer!

The internet doesn’t just bring us great opportunities to share awareness and Do Good. Like any other place, including hospitals, the internet can be a site of exploitation and nastiness. Learning how to be safe on the internet is now a life skill as important as learning to cross roads, swim, and tie your own shoe laces, so our Back To Basics article takes on this Key Stage 1 topic on pages 6-7.

Possibly one of the hardest bits of ‘awareness raising’ is talking of your own, or your child’s cancer, with people who know you. It’s often described as ‘disclosing’ a diagnosis, and this phrase captures the revealing of something unsuspected or hidden. While everyone’s story is different, we are privileged to hear the story of Talia as her mum describes her approach in preparing Talia’s school for her return.

I’d like to finish by asking a non-rhetorical question. Did anything you read in here raise your awareness of something, or help you improve the awareness of others? Let us know on facebook, twitter or send us an email!

Dr Bob Phillips is Senior Academic Consultant at University of York and Consultant Paediatric Oncologist at Leeds Royal Infirmary. He is also a CCLG member.

News in briefLack of teenage cancer patients in clinical trialsAccording to a recent report from the National Cancer Research Institute (NCRI), age limits on clinical trials need to be more flexible to allow more teenage cancer patients the chance to access new treatments.

The study found that trials designed with broader age limits resulted in more teenagers and young adults participating in clinical trials.

CCLG funds new biological studies CCLG is pleased to be funding three new novel research studies into childhood cancer. The studies all make use of samples from the CCLG Tissue Bank, a vital resource for childhood cancer researchers which ensures that sufficient tissue samples of these rare diseases are available to conduct meaningful research.

CancerStories‘CancerStories’ is a new online project providing patients and families with personal first-hand film accounts of how real patients have coped with their cancer. Georgie Moseley, mum of Harry, tells her story of how her son battled a brain tumour, which forms one of the stories within the project. www.cancerstories.info

Family Day – come and join us!The annual CCLG Family Day is taking place on 27 September in Leeds, with a theme of ‘support for families’. For more information, visit www.cclg.org.uk

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Sacha Langton-Gilks, mum of DD who sadly died of a brain tumour in 2012, is lead champion for the HeadSmart campaign which raises the awareness of brain tumour symptoms in children and teenagers.

“It was while sitting in paediatric outpatients at Southampton General Hospital with my son, DD, that really did it for me. On a pillar opposite me was a meningitis poster and I remember thinking ‘Oh, there must be a HeadSmart poster up too – a brain tumour represents the same risk to a child as contracting meningitis’. I scanned the walls but couldn’t see one.

When asked if they had a poster, all the staff shook their heads and the phrase ‘Houston, we have a problem!’ popped into my head – Apollo 13 is one of our family’s favourite films of all time! I realised that clinicians are far too busy saving our children’s lives to be worrying about whether the right information is up on hospital walls so we needed a different plan if we were to stop the late diagnosis of childhood brain tumours in the UK.

Leap forward two and half years and I’m amazed at the progress the campaign has made. I was told at the start that it takes a long time for health information to stick with the public but that was before the advent of social media. Then I was a total facebook and twitter virgin, I even scorned them – I’ve now had to eat my words!

“Over a million HeadSmart symptoms cards have

been sent out to parents in schoolbags.”

Days before DD relapsed for the final time (he was diagnosed in October 2007) we had made a YouTube clip of him saying what treatments he’d had and decided to use social media to make more people aware. When the press became involved and he became a national story, suddenly we were reaching millions of parents and young people with the crucial message about the difference early diagnosis makes. DD himself could potentially have avoided extra brain operations and the dementia

he eventually developed alongside spinal tumours, had I been aware of the symptoms and got him to our GP earlier. As a result of the publicity, over a million HeadSmart symptoms cards have been sent out to parents in schoolbags and the average time to diagnosis has been cut by 25%, from 9.1 weeks to 6.9.

However, we have another 25% still to cut in order to reach our target of 5 weeks – the average time to diagnosis in similar countries to us. For DD’s brain cancer, the most common cancerous brain tumour in children, that fortnight delay is the difference between life and death: seven weeks can mean the child has died from raised brain pressure whereas at five weeks 70-80% can be saved.

Having tried to contact every school and every GP’s surgery in Dorset, I realised that this would take far too long on a national scale and cold calling is not for the faint hearted. So in January this year, I finally met the Minister for Public Health, Jane Ellison, who agreed to send out a letter about the campaign to national Health Boards and Public Health England are contacting all their Directors of Public Health to get the cards into every pharmacy, GP’s surgery, school and children’s centre

in the UK. Ten councils have already sent out HeadSmart information this way but there are a further seventy to go. Anyone willing to help can just ask their MP to make an appointment with their Director of Public Health. HeadSmart can help with exactly what you need to ask for.

Personally, I know I will not be able to move on fully from DD’s death until we have hit our target and then children will not be suffering unnecessarily. If DD had the guts when he was dying to stand up in the media to raise awareness, I have to find the guts to finish what we started together.”

Text SMART to 81400 to get the free symptoms app on your phone.

Raising awareness of symptoms

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Contact Issue 64: Awareness

DD relaxing

Sacha promoting HeadSmart

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Deirdre Hadir, mum of Talia who was diagnosed with leukaemia in 2013, talks about how she raised awareness at Talia’s school to help her return to school.

When Talia was diagnosed with acute lymphoblastic leukaemia (ALL) in May

2013, she was catapulted into a world filled with hospital appointments and life was punctuated by bloods, obs, infusions, pushes, and strange-sounding drugs. Talia was torn from the safe pre-teen world of school, and suddenly surrounded by adults.

There is no blueprint, no carefully crafted ‘Guide to Surviving Leukemia’ – the only certainty is that ‘no one size fits all’. Like many who are going through the horrors of the road that is ALL treatment, you soon realise that there are no definitive answers. Each child, parent, and sibling develops their own coping strategies. As we neared maintenance, my mission was to ensure Talia regained confidence, and got back into the school environment. The challenge was to slowly wean her away from being with me 24/7, and re-integrate her amongst her school friends to regain some of her former independence.

My first goal was to ensure that school staff and children were informed of the basic facts about cancer, particularly ALL in children, including treatment patterns, side effects, and the impact on her performance and attendance at school. I arranged staff meetings with myself and Talia, and later with the community nursing staff. In an effort to focus on more practical concerns, I read ‘Pupils with cancer – A guide for teachers’ (published by the Royal Marsden). I began to look at the school grounds and layout to see if there were any physical and logistical challenges, then moved onto developing help guides for teachers to follow in the event of Talia needing to rest, being unwell, or being affected by the cocktail

of drugs, and finally onto a plan for sensitisation of the pupils.

I wrote a short letter to be read out at school assembly, which was aimed at giving Talia a voice. This gave basic information, but also emphasised that she was still the same person, despite physically appearing to be very different. It also helped reassure children of the fantastic remission rates for ALL. While Talia’s school had never dealt with a child who had a cancer diagnosis, I found that several children and staff had been affected by cancer in different ways, and it proved critically important to provide this reassurance, and focus on positive outcomes.

“She was still the same person, despite physically appearing

to be very different.”This school-wide assembly also allowed me to give out copies of the CCLG leaflet ‘I have a friend who has cancer’. This is a concise, easy to read, age appropriate guide which helps children think about

how to be a friend to someone who has been diagnosed with cancer.

It reflects many of the things Talia was feeling at the time, and had a tremendously positive impact on how her peers coped with the situation, supporting Talia’s return.

The next goal was to work with children at the class level. I used the publication entitled ‘Joe has Leukemia’ (published

by Clic Sargent). This gave a simple explanation of the illness, its effects, and also served to dispel myths about ‘catching’ the illness, while providing realistic hope of its cure. Having used this to talk to Talia’s cousins and friends, I ordered a further 20 copies, and set about ensuring that tutors facilitated a session where the children read the book in small groups. Pupils were then given a forum in which to discuss the issues raised. This likewise helped Talia’s sister Zarah (also in the same school) to speak openly about what she, as a sibling, had been going through.

While ironically Talia didn’t manage to get back to school as much as planned due to the devastating effects of treatment on her bones resulting in avascular necrosis, I believe that the power of communication is critical in making the transition from months of treatment back into the classroom.

Power of communication

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Talia (left) with her sister

Some common cancer mythsPower lines caused my child’s cancer: A recent study showed that children who lived near power lines did not have a greater risk of developing childhood leukaemia.

My other children might get cancer: It is very rare for another child in a family to develop cancer, as most cancers are not caused by an inherited faulty gene. Cancer is not infectious and cannot be passed on to anyone who comes into contact with your child.

My child might fall ill from a blood transfusion: All people who donate blood are carefully screened to assess their risk of having an infection or virus. Also, all donated blood is tested in a laboratory to make sure the blood is as safe as possible.

Sharks don’t get cancer: Yes, they do!

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How can the internet help us? Claire Shinfield, Information Officer at CCLG, explains how the internet can help parents and families in their quest for childhood cancer information.

‘Cancer’ – the life-changing word which everyone dreads to hear and which every doctor dreads to say. An overwhelming feeling of shock and fear and complete lack of knowledge as you try and make sense of what you are being told. What does it mean? What will happen? The questions multiply. I know this because I was in exactly this situation when my mum was diagnosed with cancer.

So, where did I turn to in my fog of confusion and disbelief? Google, of course! The most incredible invention of modern times – we can tap into an inexhaustible supply of information with lightning speed at a mere tap of a finger. Everything I ever wanted to know about cancer was there and it was mindblowing. I had no idea where to start so I clicked on everything and anything.

What exactly was I looking for? Answers and hope. Facts, statistics

and seeking anyone who had the exact same diagnosis and experience as my mum – how they coped and, ultimately, have they survived? I took comfort from the knowledge that we were not alone and there were others in the same situation across the world. The internet seemed to have an answer for everything.

So, what does the internet offer?• You can gain knowledge, research

your child’s condition and explore treatment options and what to expect. It also provides information about the medicines your child will be taking and possible side effects.

• You can gain help and support from charities and other organisations.

• It offers an easy way of communicating with others. For example, if you need to update family and friends on

your child’s condition then you can create a blog, send emails or post on social media.

• You can connect with other parents, families and young people who are in a similar situation helping you to feel less isolated.

• Your child can use the internet to chat with their friends through social networks or Facetime and Skype while on treatment.

Social networks, online communities and blogsSocial media is an excellent way to keep in touch. Sites such as Facebook and Twitter enables you to connect

Contact Issue 64: Awareness

Back to Basics

Be careful, be aware checklist• Who wrote the information –

doctors, therapists, non-medics, etc? Has it been approved by a clinical expert? Is it unbiased? When reading personal accounts (testimonies) remember that every case is different.

• When was it last updated? Is the information out of date? Is it reviewed and updated regularly?

• Consider the evidence for any medical claims – are they backed up by properly regulated research? The most reliable evidence is published in a well-respected peer-reviewed academic research journal.

• Check the feedback and contact information – are you communicating with specialists or private individuals? Remember, always refer questions back to your child’s consultant or care team.

• Is the information about childhood or adult cancers? Treatment for cancer in an adult is very different from that for a child even for the same type of cancer, for example, leukaemia. So make sure the information you are sourcing is specifically about the treatment of children.

• Is the site trying to sell you something? Is the website sponsored by a company or individual trying to get you to use a particular product or service?

• Where is the website located? There are a lot of US websites about cancer and cancer care. Children are treated differently, sometimes completely differently, in other countries even when they have exactly the same type of cancer. It can be tempting to use the internet to search for second opinions or alternative treatment from overseas.

Be aware that there will be other treatments out there but just because a treatment or protocol is different does not make it better. The treatment your child will receive is what experts believe is the best currently available treatment based on research.

• Is the site a blog, or is it a page on an established charity website? One person’s experience posted on a blog can vary from your child’s experience significantly.

• Be aware that other people’s blogs or social media posts may not be factually accurate.

• To stay safe, ensure you are protected online by using the privacy settings on social networking sites. This will limit the potential impact of ‘trolls’ .

• While some teenagers may want to check what their friends are doing on social networks, others can find it upsetting to see what they are missing out on and so increase feelings of isolation.

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with others, share updates and build friendships. However, they are less likely to be factual or offer scientific information. Online communities via charities such as Macmillan Cancer Support can be a lifeline for those who want to chat about specific issues with others across the UK. Writing a blog on different aspects of life or responding to someone else’s blog may also allow you to connect with others.

All of the above can offer help, comfort and support from others in a similar situation by reducing isolation.

Finding reliable and accurate informationWebsites can cover all aspects of cancer information and care such as helpful tips for parents and children on coping with treatment, research, clinical trials, support groups, blogs, forums, charities, holiday opportunities, and much more. Some of them will have links to other sites of interest which may be useful. Many websites will give advice and information on cancer care and treatment, but not all of these have the input or support from qualified sources. Some information can be misleading and identifying the good from the bad can be challenging. Our ‘be careful, be aware’ checklist can help you to do this.

As for me, I found that my quest for information was a journey. From knowing nothing at diagnosis, I came to know every trial, study and expert in Europe thanks to the internet. But no matter how much information I had, it wasn’t going to change my mum’s diagnosis and outcome – it just helped me gain some control. In the end, I realised that her consultant was the expert and was the only one who knew about her individual diagnosis, treatment plan and what options were available to her.

Adapted from CCLG factsheet: ‘How can the internet help us?’

Contact Issue 64: Awareness

Are you wearing a gold ribbon?This September is Childhood Cancer Awareness Month and listed here are some of the awareness campaigns being run by national charities within the UK.

Every month, hundreds of families cope with the devastating impact of a cancer diagnosis and its

treatment, and charities across the UK

and beyond are set to use September

to raise awareness of the impact of

childhood cancer and of their work

supporting young cancer patients and

their families. Here are just some of the

activities to look out for this month.

Sign up your local schools to talk about cancerTeenage Cancer Action Week runs from

the 22-28 September 2014. Teenage

Cancer Trust is asking everyone to

get behind it and sign up at their local

schools. The charity wants all teachers

and educators at schools, colleges and

universities around the country to get

involved and teach teenagers and young

people about the five most common signs of cancer. By teaching students about the common signs you could help save a life.

The most common signs of cancer in young people are persistent and unexplained:

• Pain

• Lump, bump or swelling

• Significant weight loss

• Extreme tiredness

• Changes in a mole

Teenage Cancer Trust wants all young people to be more aware of their health and how they are feeling. They want young people to see a doctor if they are worried and be confident enough to keep on going back if their health issues are not being solved. The chances of it being cancer are very small, but it’s better to get it checked.

Leaflets encouraging

schools to get

involved can be

downloaded from the

Teenage Cancer Trust

website at

www.teenagecancertrust.org/get-clued-

up/action-week/spread-the-word. These

can be personally signed and hand

delivered to teachers.

Teachers can also find teaching materials

about cancer on the Teenage Cancer

Trust website or book one of Teenage

Cancer Trust’s free cancer awareness

sessions.

Wear a gold ribbonAs well as asking people to wear a

gold ribbon to show they are standing

by families whose lives have been

turned upside down, CLIC Sargent, in

partnership with Network Rail, is set to

install a giant gold ribbon at King’s Cross

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Friends enjoying a chat

“Having cancer can put people through a very emotional and difficult time. When it’s your child, as a parent, you feel helpless and that it’s your fault and it’s you that have caused this illness.

I want to raise awareness because I want people to know that there is support out there for the whole family, and with the right attitude and the right people around you, you can get through cancer.”Mark, dad of Joseph diagnosed with lymphoma

Impact on familiesThe Macaskill family from Inverness are keen to raise awareness of the impact childhood cancer has on families – particularly with travelling many miles for treatment, which can last as long as three years, and additional costs families face.

Eight-year-old Phoebe was diagnosed with stage 4 neuroblastoma, just after her second birthday. The tumour originated in her adrenal gland and spread to her lymph nodes, bone marrow and 95 per cent of her bones. She was given a 20% chance of survival.

Phoebe had to undergo surgery, high-dose chemotherapy, radiotherapy and differentiation treatment. Post-surgery, Phoebe had her stem cells harvested and transplanted. She is now in remission.

Mum Rona said: “You spend so much money when you are away from home. I was always trying to encourage Phoebe to eat. And all the travelling. It was a very expensive time.”

Because Yorkhill Hospital in Glasgow, where Phoebe’s treatment took place, was a six hour round trip from the family’s home, their social worker also arranged for the family to stay at one of CLIC Sargent’s Homes from Home – located near principal treatment centres, where families can stay for free during their child’s treatment.

Phoebe is well now and has finished treatment. “It’s a miracle that she is still here, because that cancer has a very poor survival rate. She is amazing, she is doing so well now considering what she has been through,” Rona said.

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train station in London, and is asking buildings across the country to light up gold to raise awareness of Childhood Cancer Awareness Month.

CLIC Sargent will also be surveying the general public to gauge their level of awareness of the impact of childhood cancer, and is calling on MPs to show their support by wearing gold ribbons, or adding their names to a list of supporters on the CLIC Sargent website.

Not only that, CLIC Sargent’s Big Bucket collections will be taking place across the UK, alongside ‘go gold’ fundraising events throughout the month such as gold-themed dress down days at work and gold tea parties.

CLIC Sargent research has found that children with cancer and their families have to travel an average of a 60-mile round trip for treatment at a specialist hospital, often many days a week, and

have to find on average £327 extra per

month to cope with the extra costs of

cancer like travel, accommodation and

hospital food, with two thirds accruing

extra debt.

Wear gold for a dayAwareness is an important part of

CCLG’s work, whether it’s raising

awareness of cancer, its treatment and

its impact, as well as sources of support,

through our publications for patients and

families, or supporting our membership

of the professionals involved in looking

after children with cancer by ensuring

awareness of the latest developments in

treatment and supportive care.

This September, we’re working to

raise awareness of childhood cancer,

and the work done by our members

to ensure every child receives the

best possible treatment. We’ll be

highlighting examples of our work

using social media and we’ve teamed

up with other charities to adopt the

#ChildhoodCancerAwarenessMonth

hashtag, so that we’re all working

together to raise awareness.

We’re also asking schools, businesses

and other organisations to ‘go gold’ for

a day during September, by ‘wearing

gold’ for a day to raise awareness in

their local community. By asking for a

small donation to take part, we’ll also

be helping to ensure that our research

and information work can continue –

awareness is just the first step in the

journey to a cure.

There will also be many other local

charities undertaking fundraising

campaigns during September so please

take a look and see what is happening

in your area! And don’t forget to wear a

gold ribbon!

Phoebe and her mum

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Contact Issue 64: Awareness

Charity grants for treatment Fiona Young, trustee of children’s cancer charity Ben’s Heroes Trust, speaks about why the charity was set up, its aims and how it helps and supports children with cancer.

Awareness is an issue that Ben’s Heroes Trust has struggled with as a new charity –

awareness of who we are, what we do, of the social issues facing young people with cancer, and how our projects can help. Being a small charity without the support of a marketing budget and celebrity patrons, but also operating nationally, leaves us somewhat adrift and having to work harder to reach families in need.

So who are we? Ben’s Heroes Trust is a children’s cancer charity that helps families of children with cancer access the best possible treatment for their child by offering financial grants and fundraising support. We also take on projects to improve the quality of life of children with cancer being treated in the UK. The Trust was set up in December 2011 – one year after Ben Loyn lost his battle with cancer aged nine.

Ben’s story began on the last Friday of the 2010 summer term, when he finished school excited about the summer holidays. Ben started feeling unwell at a family BBQ and by the next morning was in Southampton General Hospital with chest pains and unable to stand up straight.

Within 24 hours, following various tests, Ben and his parents were sat down and told he had a tumour in his chest, the size of his fist, which was probably cancer. This was the first and last time Ben cried or showed any fear for the remainder of his short life.

Towards the end of Ben’s treatment, as different combinations of chemotherapy were tried and failed, Ben’s doctors acknowledged they were running out of options. A new drug was found in America specifically for Ben’s type of cancer that had just completed phase 2 trials with promising results. However, Ben’s health deteriorated so

quickly that he could not travel and soon after, only five months after diagnosis, he passed away.

After Ben’s passing, his parents Kate and Simon remembered vividly the feeling of utter helplessness and desperation they felt when trying to find a treatment and work out how they could finance the trip to access it. It was clear to them that there was a significant gap in the support networks offered by existing charities which they decided needed to be filled.

Ben’s Heroes Trust supports families in Ben’s situation in accessing the best treatment available for their child. They have seen a growing number of applications from families who are required to travel to America for proton beam therapy (a type of radiotherapy) as this treatment will not be available in the UK until 2018. While the NHS provides funds for those needing to travel abroad for this therapy, the charity can help with the extra living expenses that may be incurred.

The second focus of the charity is project work. In September 2013, we donated an iPad mini library to the children’s cancer ward at University College Hospital London. The idea was proposed by Ben’s mum Kate, as when Ben was undergoing treatment, he found

his iPad invaluable in allowing him to stay in touch with family and school friends during long hospital stays, as well as distracting him during long and often painful procedures.

Looking forward, we will continue to promote our project work to raise awareness of the social issues these youngsters face and also continue to build on our relationship with the ward-based CLIC Sargent social workers in order to reach families in need. To find out more visit: www.bensheroestrust.org.

Ben with his family

iPads in hospital

Contact Issue 60: Progress

One reason for awarenessEven though children’s cancer is rare, it is still out there and parents need to be aware! The sooner a child is diagnosed, the sooner they can be treated.

One message to familiesNever give up when everything seems to be against you. Always think of something positive and always try and smile with your child every day, even though it is very hard, and make a happy memory for your child.

One inspirationJake always made us proud every single day with his strength, courage, and bravery, and he also showed others love even though he was ill himself like always looking out for his baby brother. Jake had a smile on his face every day and never moaned about his illness and

he is and always will be our hero. I hope

he is proud of his loving family.

One favourite filmDisney’s ‘Cars’ is our family favourite

film. I never get tired of watching it as it

reminds me so much of Jake and makes

us all smile.

One final thoughtEven though I wish Jake had never

cancer, he did and we tried to make

our little boy’s short life as exciting and

fun as much as possible in between

treatment. Even though he was only five

years old when we sadly said goodbye,

I was so glad I got those years with him

which I would not change, and we have

some of the best memories. There were

so many ups and so many downs but

we never gave up hoping he would be

cured one day so when the odds are

against you never give up!

Let’s all keep working and fighting

together to find a cure for this horrible

disease as every penny counts. It may

not happen in our lifetime but for our

children’s children, lets beat cancer.

Contact archive

www.cclg.org.uk/contact/archive 11

We talk to Jo-ann who is dedicated to raising funds for research in memory of her son Jake. Jo-ann ran the Virgin Money London Marathon for CCLG this year.

One on One...with Jo-ann Ellis

The wide variety of articles published during the year in Contact adds up to a valuable and informative reference archive. If you would like any back issues, please contact the Editor (address page 2).

Details of key articles in previous editions are listed on the web at www.cclg.org.uk

Previous themes:

Achievement Issue no: 57 / December 2012

Best of Contact March 2011

Blood Issue no: 63 / June 2014

Body Image Issue no: 31 / June 2006

Celebration Issue no: 50 / March 2011

Choices/Rights of the Child Issue no: 30 / March 2006

Coping Strategies Issue no: 37 / December 2007

Diagnosis Issue no: 47 / June 2010

Emotions Issue no: 43 / June 2009

Employment Issue no: 42 / March 2009

Empowerment Issue no: 53 / December 2011

Family and Friends Issue no: 46 / March 2010

Good Ideas Issue no: 48 / September 2010

Identity Issue no: 52 / September 2011

Isolation Issue no: 51 / June 2011

Media and Communication Issue no: 58 / March 2013

Moving on Issue no: 62 / March 2014

Moving on and Changes Issue no: 41 / December 2008

Normality Issue no: 55 / June 2012

Networking Issue no: 38 / March 2008

Nutrition Issue no: 39 / June 2008

Overcoming Challenges Issue no: 61 / Winter 2013

Parents and Carers Issue no: 59 / June 2013

Play/Enjoyment Issue no: 35 / June 2007

Progress Issue no: 60 / September 2013

Radiotherapy Issue no: 40 / September 2008

Rehabilitation Issue no: 45 / December 2009

Relapse and Remission Issue no: 36 / September 2007

Support Networks Issue no: 56 / September 2012

Supportive Care Issue no: 33 / December 2006

Surgery Issue no: 44 / September 2009

Survivors Issue no: 34 / March 2007

Transition Issue no: 49 / December 2010

Transplantation Issue no: 32 / September 2006

Treatment Issue no: 54 / March 2012

Jo-ann Ellis

Would you like to raise awareness and funds for CCLG?The London marathon is not the only event in which we have charity places so why not take part in another fundraising event?

Bupa 10k, Silverstone half-marathon, Prudential RideLondon and British London 10k are just some of the events coming up over the next few months for which we have places but you can also do a skydive or local running event to help children with cancer.

Take a look at our website in the ‘Support Us’ section for more ideas: www.cclg.org.uk.

12Children’s Cancer and Leukaemia Group - www.childcancer.org.uk/contact

Contact A helping hand for families of children and young people with cancer

Corisande Albert shares how rewarding it was to launch the Tom’s Gift project to give a little happiness to children diagnosed with a brain tumour in memory of her son Tom.

Hospital administration, waiting for consultants, juggling finances, family and the twin spectres of

hope and fear – there were times in Tom’s long treatment when I forgot that I had a child in my care who just wanted to play.

It took a hospital visit from his uncle Justin to make me see what was important to a five-year-old. Justin produced a box of Playmobil from his bag and soon the two of them had transformed the narrow hospital bed into a knight’s kingdom complete with craggy mountains (those ubiquitous paper sick bowls) and baddie castle (the ever present medicine stand).

I fretted that their giggling would disturb the other children on the ward but it turned my heart to see my five year old so happy and distracted, if only for a moment. Tom wasn’t interested in comparing platelet results with the mother next door, or discussing infusion probabilities with the chemo nurse, his wants were much simpler. First he wanted to go home and, if he couldn’t go home, he wanted to be transported to a magical world of imaginative play. That day sowed the seed of ‘Tom’s Gift’.

Sadly, my Tom did not live to see its launch. His brain tumour (medulloblastoma)

returned and he died in my arms at home

in December 2010. The Tom Grahame Trust

is his legacy and through the generous

support of family, friends and the wider

community we have fully funded a pirate

playground in Clyro, Powys, as well as a

3-year research programme into high-risk

medulloblastoma run by Professor Steve

Clifford at the University of Newcastle. But

there was something that Tom’s father,

Angus, and I had left to do.

We wanted every child in Britain who

had been diagnosed with a malignant

brain tumour to be made to feel brave

and special and to have something that

would encourage them to play and get

lost for a moment in the world of childish

joy. To make Tom’s Gift a reality we were

lucky enough to team up with Macmillan

Cancer Support. They immediately got

the concept of Tom’s Gift and helped us

develop it into a national scheme through

their wide network of health professionals

and nurses, consultants, radiographers

and indeed children and parents.

Applications should be available at

paediatric wards throughout the country

and Macmillan are doing a wonderful job

of making people aware of the scheme.

Each child receives a special package with

a letter, a mystery gift and a £30 voucher to

spend at Debenhams on any toy they like.

It has been gratifying to receive feedback

from children and their families on our

Facebook page. My current favourite is “No

longer neutropenic AND his goodies from

Tom’s Gift have arrived – THANK YOU!”

Of all the projects that I have been

involved with through The Tom Grahame

Trust, Tom’s Gift has been the most

rewarding. Hearing from other families

throws me right back onto the hospital

ward and knowing that we are making

a difference, however small, is very

precious. I would like in the future to be

able to give all children with cancer the

chance to receive Tom’s Gift.

Tom was a wise five year old and, just

like him, my wants have become much

simpler. I want a cure for cancer so my

Tom could have lived, but until then I

want to help other children throw their

heads back and laugh in spite of it all.

You can apply for Tom’s Gift by

downloading and completing a simple

form from macmillan.org.uk/tomsgift.

There is a section on the form that a health

or social care professional supporting your

child will need to complete.

Spreading smiles Pirate Tom

Next issue of Contact

Due: 1 December 2014Theme: Chemotherapy

Autumn 2014 Issue 64: AwarenessIssue 64: AwarenessIssue 64: Awareness

Call for ideas!If you have a theme idea you would like us to cover, please let us know – cs349@le.ac.uk

Corisande and Tom