The cost of surviving cancer - a parent's view - Cancer Research UK

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Jane, with Amy as a baby

Being told that your child has cancer is every parent’s worst nightmare. But 13 years ago, one of our press officers, Jane Redman, received terrible news – her daughter Amy was diagnosed with a brain tumour.

Here, Jane shares her family’s story – and her vision for the future of childhood cancer research.

Many of us will have read the recent distressing story of Sally Roberts – the mother who went into hiding with her son rather than put him through radiotherapy to his brain and spine to treat a brain tumour. Terrified of the potential side effects of the radiation, she simply ran away. Her son is now having treatment after a legal battle.

The press and social media have been awash with discussion about her refusal to consent to what experts know is her child’s only chance of life. The medical consensus is that without radiotherapy his cancer would be more likely to recur and he would die.

But only those parents who have been in the same position can really understand how hard these decisions are, how brutal the treatment, and how high the costs can sometimes be.

My own daughter Amy had exactly the same type of brain tumour, a medulloblastoma, when she was nine. She had surgery followed by radiotherapy and we still have her; she is 22 now.

While we never seriously entertained the notion of not signing the consent forms for Amy’s treatment, I’m not going to pretend that it was an easy decision. When the crucial moment came to sign, my husband had to pick up the pen because I was paralysed with fear. Did I ever feel like running away? Yes, I fantasised about it daily. Did I ever regret having agreed to treatment? There was a time, yes. I don’t regret it now, but she was so severely disabled initially that I felt we had sentenced her to a non-life out of desperation not to lose her.

The cost of survival

This photo of Amy was taken just before her diagnosis with medulloblastoma - a type of brain tumour.

Amy, just before her diagnosis with medulloblastoma

We are often told of the remarkable 70-80 per cent survival rate for children with cancer. It highlights how research has transformed the outlook for many types of childhood cancer (such as the leukaemias) – but other types (such as neuroblastoma) are still in desperate need of progress.

And we can’t forget that around 20-30 per cent of children diagnosed with cancer will still die.

And it skates over the tricky issue of whether survival is always a thing worth having – whatever the cost.

The immediate price Amy paid for her life was distressingly high. Our previously bright, lively and completely normal nine-year-old was severely disabled by the tumour and its treatment. Brain swelling after surgery left her unable to communicate, swallow or move.

To put it bluntly, she was a wreck. All she could do was dribble. It was only a sixth sense that she was ‘still there’ inside her frozen brain and body that gave us any hope. She was given a 50-60 per cent chance of survival.

Rehabilitation was a lengthy process and she had to relearn all the skills we had taken for granted – swallowing, eating, speaking, moving, continence. Her education began all over again at a special school. We felt we had lost the child we knew, and determination to get her back became the driving force of our lives. For me, it became a full-time job.

But it was the most rewarding job I have ever had. Amy worked her way back into mainstream school where she gained her A-levels, and has to a great extent regained many of her lost skills. She has however been left with complex disabilities relating to her speed of processing, cognitive function, memory, balance and coordination.

She would love to work – and I remain absolutely convinced of her ability to do so – but jobs are elusive for disabled people in a recession and finding an employer prepared to make the necessary adjustments for her is proving depressingly difficult.

Amy’s cancer didn’t come back, and we have been very lucky in that respect. Like all childhood cancer survivors she has a higher risk of further cancers later in life – at least in part because of the cancer treatment she received. Other long-term effects include daily injections of growth hormone, treatment for an under-active thyroid, and permanent hair loss at the back of her head: all from radiotherapy.

Children with a different treatment history may suffer infertility, diabetes, deafness or heart and lung complications. Children having chemotherapy often spend years of their lives in and out of hospital or on intensive care fighting off life-threatening infections. Cancer Research UK-funded research showed that childhood cancer survivors tend to do worse at school and are less likely to be married.

Unfinished business

I itemise these negative impacts not to shock or frighten, but to challenge any impression from stand-alone survival statistics that childhood cancer is practically cured and that the job is almost done. The job is nowhere near done. In fact, treatments for some childhood cancers, such as brain tumours, have remained unchanged for decades. Survival rates have improved but far too many children are still dying.

Cancer is a leading cause of death in children.

It’s a bigger killer than many of the things parents are almost irrationally paranoid about – meningitis, murder, swine flu, and so on. It only takes one child in the nation to be killed in some unfortunate medical circumstances for the press and public to erupt in a frenzy of urgency about changing things to ensure it doesn’t happen again.

Yet every year in the UK, around 1600 children are diagnosed with cancer and about 250 of them die. When it comes to brain tumours, around 400 are diagnosed and around 100 die. Cancer is childhood’s nastiest, most sinister enemy, but as a nation we seem woefully unaware of the symptoms.

It is anecdotal evidence, but as both a parent and in my role as press officer for Cancer Research UK, where I interview cancer patients and parents daily, I have lost count of the children I’ve come across with cancer – particularly brain tumours – who have waited months, sometimes more than a year, for a diagnosis. By the time they arrive on the oncology ward they are bristling with red flag symptoms – headaches, early-morning vomiting, problems with coordination and balance, and visual disturbances.

No one is saying it’s easy for GPs to spot and refer a child with cancer – after all, most will probably never see a single case throughout their whole career, and many symptoms can be signs of other, less serious conditions.

But we’ve got to find ways to reduce any delays in diagnosis because these delays compromise a child’s chances of good quality survival.

Amy with dad, Chris

Why isn’t more money spent on research into childhood cancers?

It is a devastating thing to be told as you approach old age, or even middle age, that your life may be cut short by cancer.

But to be given that news for your child is a tragedy in its own league. Believe me, those survival statistics, even if you’re lucky enough to get the ‘Rolls Royce 80 per cent version’, don’t seem anywhere near as sunny when it’s your child. It is like having a gun with ten chambers held against your child’s head and being told it is ‘good news’ that only two of the chambers contain a bullet.

It’s always different when children suffer. It’s why all charity appeals featuring children are usually successful – but parents of children with cancer are left bewildered, frustrated and angry when they find that the resources available to fight childhood cancer don’t match up. And it’s even harder to bear when we see the millions poured into adult cancer research.

So why isn’t more money spent on research into childhood cancers?

Each time I’ve asked this question, I hear the same valid but hard-to-swallow reasons. Because cancer in children is rare, patient numbers are relatively low. This means that any meaningful clinical research has to be carried out internationally – this is both complex and expensive. It also puts ‘big pharma’ out of the picture because they have no interest in investing in such a small market. And the rarer cancers attract fewer researchers to pester funding bodies for money.

I’m also reminded that children do benefit from the more general research on the basic biology of cells and clinical research in adults, so the apparently small slice of the research pie devoted to childhood research isn’t a true reflection of investment in the area.

None of these points are disingenuous or wrong, but the fact remains that it is now over 13 years since my daughter was diagnosed with cancer, and I’m still hearing the same old arguments. It is time we came up with fresh approaches.

Childhood cancer is different

The thing that strikes me most is that they are all very rational arguments, arguments made with the head. They contain none of the sense of moral and emotional outrage that those in the childhood cancer community feel. No sense that it is an abomination, a violation of the natural order of things, for our children to go to the grave before us.

It has often struck me how the older generation are the ones who are most appalled by the cruelty of childhood cancer. I will never forget the queue for radiotherapy : a row of pensioners, and among them, in her wheelchair, my daughter, the youngest patient by decades. Many of those old people were moved to tears just at the sight of her.

My parents both died of cancer; my mum of pancreatic cancer at 57 and my dad of peritonitis caused by undiagnosed bowel cancer at the age of 75. Mum died when Amy was 18 months old, so never knew what life had in store for her granddaughter. Dad was alive and helped us through it. He once said to me that he would have donated his own brain if it could have saved Amy, and I know he meant it.

My father-in-law has been treated for prostate cancer. Like many of his generation he doesn’t ‘do’ illness, and bore his diagnosis and treatment almost silently and with great dignity. He told me he felt ‘like a fraud’ and could hardly think of himself as a cancer patient, having seen what his granddaughter went through.

More than three out of five cases are diagnosed in people ages 65 and over. That’s because we build-up more and more genetic damage over our lives, which is the underlying cause of cancer.

But again, childhood cancers are different – they aren’t always ‘mini versions’ of their adult counterparts. In some cases cancer starts in the womb as a child is developing. How much could it inform and advance our understanding of cancer if we focused more of our research on investigating these very fundamental changes that cause cancer as we develop? If children benefit from adult research, adults can benefit from children’s research. It works both ways.

We are our children’s advocates

We are used to hearing the voices of the different cancer ‘lobbies’, fighting for increased investment in their type of cancer. The volume of the voice usually matches the numbers involved, which is why you will hear more about breast cancer than most other types – it affects far more people, damages far more lives.

Children have no voice when it comes to fighting their own patch; they only have their parents: parents who want to see a renewed sense of urgency in tackling children’s cancer.

When I was in hospital with Amy at one of my lowest points, I came across a short book. It was written by an American, but I don’t remember its title. It gave me some useful information, but the thing that stuck in my head the most was this line: “You are your child’s advocate.”

Parents of children with cancer are united by many things.

We have all mentally rehearsed our children’s funerals; stood by the graveside and smelled the earth, heard the rattle of the first handful of dust on the coffin lid.

We have all lived off dodgy sandwiches from the hospital concourse, and slept in a campbed on the ward with not even enough privacy to cry.

We have all kept our little hospital bags of soft hair from the treasured heads of our darlings. And every one of us is saddled with a lifetime responsibility for being our child’s advocate, even if they’re dead.

There will always be parental voices, criticising, pushing and shouting for more investment. We are our children’s advocates, doing our job.

Amy with her parents and her brother, Nick, and her sister, Helena

The road ahead

We need to see more money invested on research into childhood cancers, and more acknowledgement that they are a ‘special case’ for all the reasons outlined above. Yes, there are obstacles, but new ways need to be found to overcome the obstacles and kick-start a new era of progress.

Researchers themselves need to see childhood cancer through new eyes – not as a minority area but as an untapped arena for exciting and groundbreaking research where new discoveries could translate into progress for all cancers, not just childhood cancers.

Some of the most exciting developments in cancer research have come from the paediatric community. They were the first to develop combination chemotherapies, they are experts in complex international studies, and their patients cope with treatment regimes of an intensity that would kill an adult. There is so much to be learnt, and so much to be built on.

Large and small organisations need to work together to achieve these aims, pooling their energies to create political pressure for improved funding and greater awareness of symptoms.

And we need to recognise that dealing with cancer isn’t all about ‘surviving’ the cancer, no matter what the collateral damage. For the very young, preserving quality of life is at least as important as preserving life. New, kinder treatments are desperately needed for children; treatments that don’t leave such a devastating legacy and that don’t leave parents like Sally Roberts running scared.

Jane

Jane Redman is a regional press officer at Cancer Research UK

Comments

Kim

18 July 2013

Thank you for you very powerful story. I have a daughter who has recently undergone treatment for Medulloblastoma, she is now 7 months post treatment. I cannot agree with you more about the terrible long term damage it has upon out poor little angels, the rehabilitation is not something that is readily discussed with families by the health professionals.
Is there any possibility that I could please ask you Jane – What degree of balance and coordination does your beautiful daughter suffer with today? The reason I ask is to help me get some kind of idea what level of mobility my daughter may be able to work towards. She currently is unable to walk independently or stand up without dragging herself up on the K walking frame which she has been provided. She is in a wheelchair most of the day. If you do not wish to discuss it then I will understand.
Good luck to you and your daughter for the future.
Angela Aguilera

16 July 2013

Thank you so much for sharing this story. My daughter at age 6 was diagnosed with Medullablastoma, went into coma hours after her first surgery for a whole year. She is now disable, does not walk, has a VP Shunt, G-tube, seizures etc… From being a normal healthy little girl to now facing the challenge with what this aggressive Cancer left her with. I live day by day, I am a single mom and at times it feels heavy but I try to remain strong, positive for her and my two boys…
Kim

28 June 2013

Thank you so much for posting your heart wrenching story. It is so helpful to me to hear stories from other parents who have walked a similar path to the one which my own daughter and I now walk. My daughter who is now 15 has completed a gruelling 18 month treatment for Medulloblastoma, is still unable to walk or do anything independently. I try to search for research and evidence of any statistics which will help me to gain a clearer picture of the extent to which my daughters mobility and Independence will improve. I notice that in your daughters story you state that she still suffers with balance and coordination. I would really like to be able to have a support network which would enable me to talk to other parents who have experienced the same health complications, I feel that I cope better when I can gain information about what the potential long term health/mobility and Independence issues.
I think your publication is exactly what is needed to help others realise that once treatment is over and your child is given a statement of being in remission then it isn’t all smiles and celebrations.
Much love to you and your family, in particular your beautiful, precious Amy.
David Leavesley

5 June 2013

My daughter Heather was diagnosed with non-Hodgkins Lymphoma at the age of three and a half. Following treatment, she relapsed and was given a 20% chance of survival. Further harsh treatment ensued and the protocol worked. She came out of remission by the age of 12/13. However, this is not where the story ends and readers will note tht it strikes a chord with other comments previously made.
Without going into too much detail, Heather has since been told she would find it all but impossible to have children, and has been both physically and intellectually affected by the treatment . She has since had a burst appendix leading to toxic shock that left her on life support for five days, cancer of the kidney and three brain tumours. She overcame the toxicity in her body, she had the kidney removed and a gamma knife in Sheffield has kept the brain tumours at bay. One still exists but it isn’t growing. Heather is now twenty nine.
The point that I am making is that the effects of childhood cancer last a lifetime but it is the psyche of the individual and those around them that I believe can make a big difference. Heather has many down times, especially when she wonders what might come next. But she is also a battling, living proof of what a fighter is all about. She makes me proud of whatever her achievements, but I believe that her greatest one is her faith in the medical staff who have helped her through the years and the way in which she faces the trials of life in a positive and understanding manner.
Many thanks to Jane and all who have made comments. I hope life treats you well and you all remain as healthy as possible.
Lorraine Clifton

17 April 2013

I was very moved to read Jane’s blog and everyone’s responses. I know I cannot personally even begin to imagine what you have been, and are going, through but I do hope that CLIC Sargent has been of some help – and that you will tell us where we can do more. What I really wanted to do was to say how hugely pleased I was to read Harpal’s commitment to consider how CRUK can do more to bring about better, and kinder, treatments for childhood cancer. That is great news, and I look forward to seeing the updated research strategy.

With very best wishes and, Harpal, thank you

Lorraine Clifton
Chief Executive
CLIC Sargent
Anita Mullenix

18 March 2013

Thank you for sharing your story. My daughter has been fighting Hodgkins Lymphoma Stage 4 three times,a total of 10 years altogether. Cancer is a horrible life changing disease and the aftermath is just as horrific. Cancer stole her Childhood,her ability to have children and so many more. I will fight for a cure until I draw my last breath.
Dr Mark Gaze

14 March 2013

Dear Jane

Thank you for having the courage to tell Amy’s story. What you have so vividly described will be appreciated by parents with children who have required treatment for brain tumours of various sorts, and other types of cancer. Your experiences will also be recognised by those doctors, nurses, radiographers and other health care professionals whose job it is to care for children and teenagers with leukaemia and cancer. We may not necessarily have experienced it in our own families, but each day we talk to parents and children going through cancer treatment.

The Children’s Cancer and Leukaemia Group (CCLG) (www.cclg.org.uk) is the association for these healthcare professionals in Britain and Ireland. Its members work closely with affected families in a number of ways. We produce many award-winning publications, quality accredited by the Information Standard, which help children and their families understand better what they will be experiencing. Uncertainty leads to fear, but understandable and reliable information promotes empowerment. Our publications are freely available to patients and families.

We produce treatment guidelines which help to ensure all children receive the best, evidence-based treatment for their disease, wherever they are treated.

A Good Practice Guide for Paediatric Radiotherapy has recently been published, developed with input from parents. This sets the standard for age appropriate care, and should mean that children no longer have to wait for treatment in adult areas.

We organise educational meetings for doctors, nurses and other professionals to ensure that everyone is kept up to date with the latest developments in all areas, allowing for the sharing of best practice and expertise.

We support research in a number of ways to improve treatment outcomes.

The group also advises the Governments in the UK and NHS commissioners on the services children require.

We hope that you, and others in a similar position will support the work of CCLG as well as the important research funded by Cancer Research UK.

Dr Mark Gaze
Chairman
Children’s Cancer and Leukaemia Group (CCLG)
University of Leicester, UK
Sarah Buckley

14 March 2013

Thank you Jane for writing this blog, it is frank and to the point, but that is what is needed to make people stand up and fight childhood cancer. My son has completed treatment for Neuroblastoma cancer, he was stage 4 and required 15 months of gruelling treatment. I too have stood up and advocated many a time to get the best for him. We are at the point of retest time to ensure he remains clear. Relapse rates are documented at 60%, so Harry has a 40% chance of survival. Very little money is put into researching this cancer, partly because only 100 children a year are diagnosed. However, more research needs to be undertaken to understand why Harry developed faulty cells that grew into a huge tumour in his abdomen and spread to his bones and bone marrow. He had the best diet imaginable etc. Harry bless him saw an advert on TV that was very visual regarding the links between smoking and cancer. a few days after seeing this advert, which I hadn’t realised he had taken in, he made a statement saying he had never smoked, so why did he get cancer and that we really cannot answer!
So Harry has endured chemotherapy of varying degrees and combinations, a stem cell rescue, radiotherapy and antibody treatment. the treatment is harsh to attempt to beat this aggressive cancer and so we await to see how his development is affected. Currently he is doing amazingly well, long may it continue, however the fears of relapse are ever there and every lump and bump is over examined. He is hopefully cured, but surviving cancer is a whole new ball game for the whole family.
Gemma Middlemass

13 March 2013

Jane

I am crying at your story. It is very similar to mine – different tumours but my son is also in special needs education because of complications due to his tumour. I am lucky he is still with us. Thank you for sharing your story and hopefully you have raised awareness for the future for other children.
Susan Hermitage

13 March 2013

My daughter is just 20 months old, and was diagnosed with a Glioblastoma Multiforme at 10 months old. Your article, Jane, voices our thoughts and fears so eloquently; things we dare not say to others while we are still going through this ordeal. Unfortunately from diagnosis the tumour she has is inoperable and untreatable, and we do not know how long we have left with her. Thank you for taking the time to highlight the plight of so many parents. One of the most painful things to read or watch on television is adverts for cancer reasearch that claim that people can avoid getting cancer by following certain lifestlye habits and reducing their alcohol and cigarette consumption. Childhood cancer, as you so rightly say Jane, does not work like that. So much more money needs to be spent on research into brain tumours, but when will someone finally take the lead and change the amount spent compared to other cancers? It is too late for us, but for other parents I pray that one day not far from now a breakthrough will be made.
Donna Tine

13 March 2013

I do not have a child with cancer but I’ve become friends with a mother who lost her 5 yr old son due to the effects of his cancer treatments. I have another friend whose son is battling Leukemia. Through the power of social networking I have come to “know” hundreds of other kids battling this beast or that have lost the fight. What I’ve learned about childhood cancers in the past few months breaks my heart. As the mother to a 3 yr old son, I cannot sit idly by and pretend that cancer can’t happen to us. The common refrain from EVERY family I’ve come to know about is that NONE of them had reason to think cancer was in their child’s future. There are no known causes that determine why their child met this fate. And I know that families that are so entrenched in fighting for their children can’t also fight the battle for awareness and research on their own. They’ve got the biggest fight of their lives to deal with – it’s the rest of us that have to get on board and help beat the drum so that people will get their heads out of the sand and start demanding more $$ for research. I think with the help of social media the Childhood Cancer community is starting to enlist more advocates and starting to band together as ONE voice so that we’ll start being heard. Hoping to see big changes in the years to come. Praying for Amy, praying for you all.
Nicola O'Connor

13 March 2013

Dear Jane, thank you for telling your story in such an incredibly powerful way. It moved me to tears as did Prof Walker’s words about walking with you through that journey. The partnership between parent and the medical team is so critical when a child is ill, you summarise that role so eloquently. And you’re still advocating, not just for Amy but for the many children affected by cancer whose voices may not be heard.
I have not had a child with cancer, but I have had a child whose life hung by a thread for the first few months of his life because he was born too soon. The experiences that united you with other parents are so familiar to me, they never leave you and make the resolve to celebrate every day you have with them so important.
But as they grow up, and against the backdrop of long term effects, the desire to hear that things are changing is so important. That your dreadful experience has made a difference, that lessons are learned, and that consideration is given to the quality of life our precious children have ahead of them. I applaud you for your rallying cry – surviving is the first step, living is the rest of the story. It’s inspiring to read the response your story has got, and I wanted to say that your message resonates beyond the cancer community. All the very best to you and Amy.
Eleanor smart

13 March 2013

A path of life I have also travelled, unfortunately I lost my little boy, but I felt I screamed and struggled through the whole 4 yrs process, cause he was to young to voice his needs, more needs to be done, hopefully you’ve put the ball in motion, x
Professor David Walker

12 March 2013

Jane and Harpal

Thank you Jane, for telling your story. We walked together through Amy’s illness and I know every word you have written here is a heartfelt and accurate description. Amy’s triumph after her operation is a miracle and her recovery is in no small part due to your family’s loving diligence in leaving no stone unturned in her interest. This continues.

Harpal, your response on behalf of the Charity is welcome news indeed. Research is the life line for children with cancer. Investment in the field has brought massive rewards for the children and their families, as well as scientific understanding of many principles of cancer science and practice. If these are quantified, they outstrip the return on investment in many other areas of translational and basic science research because they are not only applicable to children, with so many years ahead of them, but also because the scientific principles investigated are simplified by their early age and can then be successfully generalised to later life. Increasingly, the research into new drugs means that mechanisms common to cancers in childhood and adulthood can be targeted by the same drugs, if tested and licensed for the children.

Your commitment to respond to Jane’s message is welcome and clear evidence of your commitment to spend what you are given in the name of children and young people with cancer because it is not only a wise investment but also because it meets the expectations of society.

Representing the paediatric neuro-oncologists across the UK, Europe and Worldwide I applaud your commitment to renewed investment in childhood cancer. I encourage you to look at the needs of those with brain tumours, like Amy, with particular care and I encourage your intention to commit powerful funding in this field of vital humanitarian research, which bridges the scientific challenge of neuroscience and cancer.

David A Walker
Professor Paediatric Oncology
Children’s Brain Tumour research Centre
University of Nottingham
Nottingham Children’s Hospital
NUH NHS Trust.
http://www.cbtrc.org

Principal Investigator
HeadSmart Be Brain Tumour Aware Campaign
http://www.headsmart.org.uk

President (elect)
British Neuro-Oncology Society
http://www.bnos.org
Elisse Breugelmans

12 March 2013

My daughter Francesca was diagnosed with a Medullablastoma when she was 11 years old, we recently celebrated her 22nd birthday! Life was changed with this diagnosis for ever for our entire family and this wonderful honest account made me cry as it brought back so many memories and feelings. It is true, we all keep little bags of hair, can remember the camp bed the grim sandwiches and never ending disney videos on the ward. Birmingham Children’s Hospital were wonderful, I firmly believe there is NO choice and at times if I ever doubted I made the right decision, the news in the press about Sally Roberts and little Neon made me see there never was a choice. The gruelling treatment and survival most often comes at a price, but there is never a day goes that I am not grateful Francesca is with us.
Shirley Slater

12 March 2013

Beautifully written and heartfelt x My own daughter Lily was diagnosed with medulloblastoma in 2007 aged 3. Lily and her twin sister Willow will be 9 in a couple of weeks. I feel fortunate enough to be planning her birthday rather than her funeral which I’d planned so many times before in those dark bleak days x
Janine Hardwck.

12 March 2013

Sorry predictive text, lots of spelling mistakes.
Janine Hardwck.

12 March 2013

I love reading the positive outcomes after having lost my Owen child, my son Owen was only 4 and a half when he was diagnosed with a diffuse intrinsic pontine Glioma, (DIPG) sadly this type of grain tumour is maligment and terminal from diagnosis. It is also inoperable, and radiotherapy is given a symptom control. Owen put up a very brave battle but sadly passed away 9 months later 3 months after his 5th birthday in October 2011.
Harpal Kumar

12 March 2013

Jane – thanks so much for sharing your story with us – it’s really struck a chord.

Many people have been in touch with us in recent months regarding our research into childhood cancers. Although the conversations have been challenging, we’d like to thank you all for being so frank with us and for telling us about the challenges you have faced.

We wanted to share this story with you – and reassure you that the issues that matter to you matter to us. It’s why we’re all here.

We understand how important research into childhood cancers is to many of our supporters – it is to us too. We’ve supported the incredible UK childhood cancer research community for many years and we’re proud of our accomplishments. Our involvement in, and funding, of many international trials has provided lifelines for children with many different types of cancer – such as leukaemias and Wilm’s tumour – and our doctors continue to hunt down treatments which are gentler for their smaller patients. This is going on every single day – from work in our labs through to clinical trials (you can have a look at some here).

But like you, we want more. We want to arm doctors with better treatments so that no parent has to face the anguish of losing their child. And we also want kinder treatments, so that going through treatment isn’t such an arduous experience and so that we don’t leave such a lasting legacy on our little ones.

Prompted by all of you, we’re going to explore ways to do it sooner. Jane’s story is going to feed into the discussions we’re having about our updated research strategy, and we’re going to share her blog post with our researchers to inspire them too. Many of you have spoken about the need to diagnose children with cancer earlier, and we’ll be writing about that in the coming weeks.

It won’t happen overnight, but we’re looking forward to helping build the ‘new era of progress’ that Jane spoke so hopefully of – for all our children’s sakes.

Dr Harpal Kumar,
Chief Executive
Cancer Research UK

Comments

Kim

18 July 2013

Thank you for you very powerful story. I have a daughter who has recently undergone treatment for Medulloblastoma, she is now 7 months post treatment. I cannot agree with you more about the terrible long term damage it has upon out poor little angels, the rehabilitation is not something that is readily discussed with families by the health professionals.
Is there any possibility that I could please ask you Jane – What degree of balance and coordination does your beautiful daughter suffer with today? The reason I ask is to help me get some kind of idea what level of mobility my daughter may be able to work towards. She currently is unable to walk independently or stand up without dragging herself up on the K walking frame which she has been provided. She is in a wheelchair most of the day. If you do not wish to discuss it then I will understand.
Good luck to you and your daughter for the future.
Angela Aguilera

16 July 2013

Thank you so much for sharing this story. My daughter at age 6 was diagnosed with Medullablastoma, went into coma hours after her first surgery for a whole year. She is now disable, does not walk, has a VP Shunt, G-tube, seizures etc… From being a normal healthy little girl to now facing the challenge with what this aggressive Cancer left her with. I live day by day, I am a single mom and at times it feels heavy but I try to remain strong, positive for her and my two boys…
Kim

28 June 2013

Thank you so much for posting your heart wrenching story. It is so helpful to me to hear stories from other parents who have walked a similar path to the one which my own daughter and I now walk. My daughter who is now 15 has completed a gruelling 18 month treatment for Medulloblastoma, is still unable to walk or do anything independently. I try to search for research and evidence of any statistics which will help me to gain a clearer picture of the extent to which my daughters mobility and Independence will improve. I notice that in your daughters story you state that she still suffers with balance and coordination. I would really like to be able to have a support network which would enable me to talk to other parents who have experienced the same health complications, I feel that I cope better when I can gain information about what the potential long term health/mobility and Independence issues.
I think your publication is exactly what is needed to help others realise that once treatment is over and your child is given a statement of being in remission then it isn’t all smiles and celebrations.
Much love to you and your family, in particular your beautiful, precious Amy.
David Leavesley

5 June 2013

My daughter Heather was diagnosed with non-Hodgkins Lymphoma at the age of three and a half. Following treatment, she relapsed and was given a 20% chance of survival. Further harsh treatment ensued and the protocol worked. She came out of remission by the age of 12/13. However, this is not where the story ends and readers will note tht it strikes a chord with other comments previously made.
Without going into too much detail, Heather has since been told she would find it all but impossible to have children, and has been both physically and intellectually affected by the treatment . She has since had a burst appendix leading to toxic shock that left her on life support for five days, cancer of the kidney and three brain tumours. She overcame the toxicity in her body, she had the kidney removed and a gamma knife in Sheffield has kept the brain tumours at bay. One still exists but it isn’t growing. Heather is now twenty nine.
The point that I am making is that the effects of childhood cancer last a lifetime but it is the psyche of the individual and those around them that I believe can make a big difference. Heather has many down times, especially when she wonders what might come next. But she is also a battling, living proof of what a fighter is all about. She makes me proud of whatever her achievements, but I believe that her greatest one is her faith in the medical staff who have helped her through the years and the way in which she faces the trials of life in a positive and understanding manner.
Many thanks to Jane and all who have made comments. I hope life treats you well and you all remain as healthy as possible.
Lorraine Clifton

17 April 2013

I was very moved to read Jane’s blog and everyone’s responses. I know I cannot personally even begin to imagine what you have been, and are going, through but I do hope that CLIC Sargent has been of some help – and that you will tell us where we can do more. What I really wanted to do was to say how hugely pleased I was to read Harpal’s commitment to consider how CRUK can do more to bring about better, and kinder, treatments for childhood cancer. That is great news, and I look forward to seeing the updated research strategy.

With very best wishes and, Harpal, thank you

Lorraine Clifton
Chief Executive
CLIC Sargent
Anita Mullenix

18 March 2013

Thank you for sharing your story. My daughter has been fighting Hodgkins Lymphoma Stage 4 three times,a total of 10 years altogether. Cancer is a horrible life changing disease and the aftermath is just as horrific. Cancer stole her Childhood,her ability to have children and so many more. I will fight for a cure until I draw my last breath.
Dr Mark Gaze

14 March 2013

Dear Jane

Thank you for having the courage to tell Amy’s story. What you have so vividly described will be appreciated by parents with children who have required treatment for brain tumours of various sorts, and other types of cancer. Your experiences will also be recognised by those doctors, nurses, radiographers and other health care professionals whose job it is to care for children and teenagers with leukaemia and cancer. We may not necessarily have experienced it in our own families, but each day we talk to parents and children going through cancer treatment.

The Children’s Cancer and Leukaemia Group (CCLG) (www.cclg.org.uk) is the association for these healthcare professionals in Britain and Ireland. Its members work closely with affected families in a number of ways. We produce many award-winning publications, quality accredited by the Information Standard, which help children and their families understand better what they will be experiencing. Uncertainty leads to fear, but understandable and reliable information promotes empowerment. Our publications are freely available to patients and families.

We produce treatment guidelines which help to ensure all children receive the best, evidence-based treatment for their disease, wherever they are treated.

A Good Practice Guide for Paediatric Radiotherapy has recently been published, developed with input from parents. This sets the standard for age appropriate care, and should mean that children no longer have to wait for treatment in adult areas.

We organise educational meetings for doctors, nurses and other professionals to ensure that everyone is kept up to date with the latest developments in all areas, allowing for the sharing of best practice and expertise.

We support research in a number of ways to improve treatment outcomes.

The group also advises the Governments in the UK and NHS commissioners on the services children require.

We hope that you, and others in a similar position will support the work of CCLG as well as the important research funded by Cancer Research UK.

Dr Mark Gaze
Chairman
Children’s Cancer and Leukaemia Group (CCLG)
University of Leicester, UK
Sarah Buckley

14 March 2013

Thank you Jane for writing this blog, it is frank and to the point, but that is what is needed to make people stand up and fight childhood cancer. My son has completed treatment for Neuroblastoma cancer, he was stage 4 and required 15 months of gruelling treatment. I too have stood up and advocated many a time to get the best for him. We are at the point of retest time to ensure he remains clear. Relapse rates are documented at 60%, so Harry has a 40% chance of survival. Very little money is put into researching this cancer, partly because only 100 children a year are diagnosed. However, more research needs to be undertaken to understand why Harry developed faulty cells that grew into a huge tumour in his abdomen and spread to his bones and bone marrow. He had the best diet imaginable etc. Harry bless him saw an advert on TV that was very visual regarding the links between smoking and cancer. a few days after seeing this advert, which I hadn’t realised he had taken in, he made a statement saying he had never smoked, so why did he get cancer and that we really cannot answer!
So Harry has endured chemotherapy of varying degrees and combinations, a stem cell rescue, radiotherapy and antibody treatment. the treatment is harsh to attempt to beat this aggressive cancer and so we await to see how his development is affected. Currently he is doing amazingly well, long may it continue, however the fears of relapse are ever there and every lump and bump is over examined. He is hopefully cured, but surviving cancer is a whole new ball game for the whole family.
Gemma Middlemass

13 March 2013

Jane

I am crying at your story. It is very similar to mine – different tumours but my son is also in special needs education because of complications due to his tumour. I am lucky he is still with us. Thank you for sharing your story and hopefully you have raised awareness for the future for other children.
Susan Hermitage

13 March 2013

My daughter is just 20 months old, and was diagnosed with a Glioblastoma Multiforme at 10 months old. Your article, Jane, voices our thoughts and fears so eloquently; things we dare not say to others while we are still going through this ordeal. Unfortunately from diagnosis the tumour she has is inoperable and untreatable, and we do not know how long we have left with her. Thank you for taking the time to highlight the plight of so many parents. One of the most painful things to read or watch on television is adverts for cancer reasearch that claim that people can avoid getting cancer by following certain lifestlye habits and reducing their alcohol and cigarette consumption. Childhood cancer, as you so rightly say Jane, does not work like that. So much more money needs to be spent on research into brain tumours, but when will someone finally take the lead and change the amount spent compared to other cancers? It is too late for us, but for other parents I pray that one day not far from now a breakthrough will be made.
Donna Tine

13 March 2013

I do not have a child with cancer but I’ve become friends with a mother who lost her 5 yr old son due to the effects of his cancer treatments. I have another friend whose son is battling Leukemia. Through the power of social networking I have come to “know” hundreds of other kids battling this beast or that have lost the fight. What I’ve learned about childhood cancers in the past few months breaks my heart. As the mother to a 3 yr old son, I cannot sit idly by and pretend that cancer can’t happen to us. The common refrain from EVERY family I’ve come to know about is that NONE of them had reason to think cancer was in their child’s future. There are no known causes that determine why their child met this fate. And I know that families that are so entrenched in fighting for their children can’t also fight the battle for awareness and research on their own. They’ve got the biggest fight of their lives to deal with – it’s the rest of us that have to get on board and help beat the drum so that people will get their heads out of the sand and start demanding more $$ for research. I think with the help of social media the Childhood Cancer community is starting to enlist more advocates and starting to band together as ONE voice so that we’ll start being heard. Hoping to see big changes in the years to come. Praying for Amy, praying for you all.
Nicola O'Connor

13 March 2013

Dear Jane, thank you for telling your story in such an incredibly powerful way. It moved me to tears as did Prof Walker’s words about walking with you through that journey. The partnership between parent and the medical team is so critical when a child is ill, you summarise that role so eloquently. And you’re still advocating, not just for Amy but for the many children affected by cancer whose voices may not be heard.
I have not had a child with cancer, but I have had a child whose life hung by a thread for the first few months of his life because he was born too soon. The experiences that united you with other parents are so familiar to me, they never leave you and make the resolve to celebrate every day you have with them so important.
But as they grow up, and against the backdrop of long term effects, the desire to hear that things are changing is so important. That your dreadful experience has made a difference, that lessons are learned, and that consideration is given to the quality of life our precious children have ahead of them. I applaud you for your rallying cry – surviving is the first step, living is the rest of the story. It’s inspiring to read the response your story has got, and I wanted to say that your message resonates beyond the cancer community. All the very best to you and Amy.
Eleanor smart

13 March 2013

A path of life I have also travelled, unfortunately I lost my little boy, but I felt I screamed and struggled through the whole 4 yrs process, cause he was to young to voice his needs, more needs to be done, hopefully you’ve put the ball in motion, x
Professor David Walker

12 March 2013

Jane and Harpal

Thank you Jane, for telling your story. We walked together through Amy’s illness and I know every word you have written here is a heartfelt and accurate description. Amy’s triumph after her operation is a miracle and her recovery is in no small part due to your family’s loving diligence in leaving no stone unturned in her interest. This continues.

Harpal, your response on behalf of the Charity is welcome news indeed. Research is the life line for children with cancer. Investment in the field has brought massive rewards for the children and their families, as well as scientific understanding of many principles of cancer science and practice. If these are quantified, they outstrip the return on investment in many other areas of translational and basic science research because they are not only applicable to children, with so many years ahead of them, but also because the scientific principles investigated are simplified by their early age and can then be successfully generalised to later life. Increasingly, the research into new drugs means that mechanisms common to cancers in childhood and adulthood can be targeted by the same drugs, if tested and licensed for the children.

Your commitment to respond to Jane’s message is welcome and clear evidence of your commitment to spend what you are given in the name of children and young people with cancer because it is not only a wise investment but also because it meets the expectations of society.

Representing the paediatric neuro-oncologists across the UK, Europe and Worldwide I applaud your commitment to renewed investment in childhood cancer. I encourage you to look at the needs of those with brain tumours, like Amy, with particular care and I encourage your intention to commit powerful funding in this field of vital humanitarian research, which bridges the scientific challenge of neuroscience and cancer.

David A Walker
Professor Paediatric Oncology
Children’s Brain Tumour research Centre
University of Nottingham
Nottingham Children’s Hospital
NUH NHS Trust.
http://www.cbtrc.org

Principal Investigator
HeadSmart Be Brain Tumour Aware Campaign
http://www.headsmart.org.uk

President (elect)
British Neuro-Oncology Society
http://www.bnos.org
Elisse Breugelmans

12 March 2013

My daughter Francesca was diagnosed with a Medullablastoma when she was 11 years old, we recently celebrated her 22nd birthday! Life was changed with this diagnosis for ever for our entire family and this wonderful honest account made me cry as it brought back so many memories and feelings. It is true, we all keep little bags of hair, can remember the camp bed the grim sandwiches and never ending disney videos on the ward. Birmingham Children’s Hospital were wonderful, I firmly believe there is NO choice and at times if I ever doubted I made the right decision, the news in the press about Sally Roberts and little Neon made me see there never was a choice. The gruelling treatment and survival most often comes at a price, but there is never a day goes that I am not grateful Francesca is with us.
Shirley Slater

12 March 2013

Beautifully written and heartfelt x My own daughter Lily was diagnosed with medulloblastoma in 2007 aged 3. Lily and her twin sister Willow will be 9 in a couple of weeks. I feel fortunate enough to be planning her birthday rather than her funeral which I’d planned so many times before in those dark bleak days x
Janine Hardwck.

12 March 2013

Sorry predictive text, lots of spelling mistakes.
Janine Hardwck.

12 March 2013

I love reading the positive outcomes after having lost my Owen child, my son Owen was only 4 and a half when he was diagnosed with a diffuse intrinsic pontine Glioma, (DIPG) sadly this type of grain tumour is maligment and terminal from diagnosis. It is also inoperable, and radiotherapy is given a symptom control. Owen put up a very brave battle but sadly passed away 9 months later 3 months after his 5th birthday in October 2011.
Harpal Kumar

12 March 2013

Jane – thanks so much for sharing your story with us – it’s really struck a chord.

Many people have been in touch with us in recent months regarding our research into childhood cancers. Although the conversations have been challenging, we’d like to thank you all for being so frank with us and for telling us about the challenges you have faced.

We wanted to share this story with you – and reassure you that the issues that matter to you matter to us. It’s why we’re all here.

We understand how important research into childhood cancers is to many of our supporters – it is to us too. We’ve supported the incredible UK childhood cancer research community for many years and we’re proud of our accomplishments. Our involvement in, and funding, of many international trials has provided lifelines for children with many different types of cancer – such as leukaemias and Wilm’s tumour – and our doctors continue to hunt down treatments which are gentler for their smaller patients. This is going on every single day – from work in our labs through to clinical trials (you can have a look at some here).

But like you, we want more. We want to arm doctors with better treatments so that no parent has to face the anguish of losing their child. And we also want kinder treatments, so that going through treatment isn’t such an arduous experience and so that we don’t leave such a lasting legacy on our little ones.

Prompted by all of you, we’re going to explore ways to do it sooner. Jane’s story is going to feed into the discussions we’re having about our updated research strategy, and we’re going to share her blog post with our researchers to inspire them too. Many of you have spoken about the need to diagnose children with cancer earlier, and we’ll be writing about that in the coming weeks.

It won’t happen overnight, but we’re looking forward to helping build the ‘new era of progress’ that Jane spoke so hopefully of – for all our children’s sakes.

Dr Harpal Kumar,
Chief Executive
Cancer Research UK

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