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Archive for August, 2010

Today is your birthday and we should be going out to celebrate. I cannot speak because of the sores in my throat, although you say it is wonderful to have a wife who cannot answer back.

Happy birthday my darling husband . I cannot begin to tell you how much you mean to me so I will just say I love you with all of my heart and then some.

Dani xx

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Make your vote count

We voted the MPs in. Now let’s get them to make cancer care a health priority for the new Government.

In the run up to the General Election we asked every Prospective Parliamentary Candidate (PPC) to ‘Vote Cancer Support’ and help change cancer care in the UK.

Now, many of them are MPs and we need their commitment to our three calls:

1. We want every cancer patient to have a post treatment care plan and appropriate support to help them get back to work.

2. We want people with rarer cancers to have fair access to clinically effective drug treatments.

3. We want every person with cancer nearing the end of their life to be supported by a community nurse, day and night, so that they can die at home if they so wish.

We’ll also be asking any MPs who didn’t ‘Vote cancer support’ to reconsider and support us.

How you can help

Email your MP and ask them to ensure our three calls feature in the Government’s future plans for cancer.

Simply fill in your details below and hit submit to bring up the email to your MP.

You can use our template or personalise it with your own experience.

http://bit.ly/d0OoJy

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Campaigners have condemned a decision to turn down a bowel cancer drug for use on the NHS.

The health watchdog NICE says the cost of avastin – at about £21,000 per patient – does not justify its benefits.

It offers patients with advanced bowel cancer the chance of a few extra weeks or months of life.

Cancer charities hope the new cancer drug fund set up by the government will give greater access to the treatment.

Avastin, also known as bevacizumab, works by reducing the blood supply to a tumour, causing it to shrink or stop growing.

It is used in the US and across Europe, but patients in the UK have to buy the drug privately or appeal to their local health authority for funding.

It is estimated that around 6,500 patients a year in the UK could benefit from avastin.

The decision by the National Institute for Health and Clinical Excellence (NICE) to turn down the drug for use on the NHS is subject to further consultation and appeal.

Avastin (bevacizumab) can help patients with advanced bowel cancer which has spread to other organs
It is also used in breast cancer and lung cancer
Avastin can stop some cancers from developing new blood vessels, which causes the tumour to shrink, or stop growing

NICE said avastin typically offered patients with advanced bowel cancer an extra six weeks of life, when added to chemotherapy drugs, according to clinical data. But campaigners dispute this figure, saying other studies suggest it can prolong life for much longer.

Sir Andrew Dillon, chief executive of NICE, said the body had recommended several other treatments for various stages of the cancer.

“We are disappointed not to be able to recommend bevacizumab as well, but we have to be confident that the benefits justify the considerable cost of this drug,” he said.

Ian Beaumont, campaigns director of Bowel Cancer UK, said the charity was “disappointed” that NICE has turned down avastin for use on the NHS, when it was “so widely available to patients across the rest of Europe”.

He said it was “regrettable” that it had taken NICE nearly a year to reach its verdict.

It seems immoral to me that, as a result of negative NICE decisions like this one, people’s choice of living or dying depends on whether they can afford a drug”

Barbara Moss

Bowel cancer patient

And he told BBC Breakfast the report NICE had partially based its decision on was “flawed” and that subsequent studies had showed better results which extended the life of patients beyond six weeks.

He added: “Obviously, at the moment there are massive pressures on the NHS because of the budgetary shortfalls.

“But I would argue that if people who are dying in agony are not a priority for the NHS, if people who can be helped to live longer and feel better in that situation are not a priority for the NHS, then there’s something wrong with the priorities of the NHS.”

Campaigners believe the new cancer drug fund set up by the coalition government could be a source of funding for patients seeking drugs like avastin.

Patients in England will be able to apply to the £50m interim cancer drug fund from October, with further money available next year.

Mike Hobday, head of policy at Macmillan Cancer Support, said the NICE decision was “devastating news” for patients with advanced bowel cancer.

“Although a few extra weeks or months might not sound much to some people, it can mean an awful lot to a family affected by cancer.

“Again this reiterates just how important it is that the government’s cancer drug fund comes into place sooner rather than later. On behalf of people living with cancer, Macmillan will hold the government to their £200m commitment in order to ensure people with rarer cancers have fair access to clinically effective drugs.”

Barbara Moss, from Worcester, who has advanced bowel cancer, says she is “living proof” that avastin works.

She added: “It seems immoral to me that, as a result of negative NICE decisions like this one, people’s choice of living or dying depends on whether they can afford a drug, because it isn’t available to them on the NHS.”

http://www.bbc.co.uk/news/health-11060968

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I have only now received the very sad news of WOLFIES death.

Wolfie blogged on Blog for a Cure. He was only 22 years old, young and so, so special.

I loved you Wolfie and your great courage as you faced death was an inspiration to us all.

I have placed this here from your dad. Your dad Wolfie loved you so much, may you now rest in peace and there be no more pain.

Cancer has won again and taken another precious life.

It is with mixed emotions that I inform you of the death of my son, Andreas, on Aug 18, 2010.

Andreas has been part of my life for the last 6 years. During that time, he has become my best friend, advisor and adoptive relative. I am glad to have had the experience to enjoy and live his carisma an energy. He shares life’s values to the fullest and will be dearly missed.

He personally thanks you for your support, love and prayers. Before death, he made me promise to update his supporters on this site and to utilize this site for support, as it served him of great comfort. I greatly appreciate any support the readers may have given Andreas, for that, I will always be thankful. In this fight of cancer, join me in raising awareness and funds to find s cure for this disease.

Please join me in praying for his eternal rest as he enjoys God’s most precious gift, Eternal Life.

Sincerely,

Dad

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As a hospital cleaner, Margaret Cummins dedicated years of her life to the Health Service.

She would keep the buildings spick and span – and go out of her way to help the sick and reassure those in distress.

But if she expected a little respect in return when she became a cancer patient, she was very wrong.

Instead, the 74-year-old’s family were told that she could not have a vital scan because that particular unit was closed at weekends.

The locum doctor said: ‘We’ll do it on Monday – if she’s still here.’

That crass remark was among 36 criticisms levelled at Northampton General Hospital, where Mrs Cummins spent 24 days.

The grandmother died in a hospice just two months after being diagnosed with a lung cancer that had been deemed treatable.

And Mrs Cummins’s family claim that her appalling treatment in hospital contributed to her death.

Her daughter Julie Fordham said: ‘Mum dedicated much of her life to working for the NHS. She wasn’t high-profile, simply back-room, going about a menial but important job with spirit and a sense of pride.

She loved the patients.

‘She always believed the NHS was marvellous, but in this case its standards fell sadly short. We feel she was left to die.’ The family’s claims prompted the chief executive to apologise for 11 failures in her care.

Those included her walking frame being moved out of reach so she fell out of bed, being unable to ring a bedside alarm for help because it was out of reach and being left on the floor for 15 minutes.

Julie Fordham, and Chris Cummins, the daughter and husband of Margaret, received multiple apologies from Northampton General Hospital bosses
Her medical notes were also removed from her bed, a Do Not Resuscitate order was posted before it had been discussed with her family, and she was kept waiting for 12 hours for an ambulance dressed only in a nightie and no underwear when she was transferred between hospitals.

Her family also claim she was dropped from a hoist into a bath which caused her lung to collapse. The hospital denies this.

NHS bosses met the family privately this month to apologise, insisting they had put in place procedures to ensure the blunders were never repeated.

Mrs Cummins’s ordeal began in October when she was diagnosed with lung cancer. By November she had deteriorated so much she had to spend her 50th wedding anniversary in hospital.

On December 5 her family were called to her bedside.

The pair celebrated their 50th Golden wedding anniversary in Northampton General Hospital where Margaret spent 24 days

Mrs Fordham, 43, a mother of two, said: ‘We were told that she was going to die. Her breathing had deteriorated rapidly and we said she needed a lung scan or Xray to find out what was wrong.

‘But a locum doctor took us off into a side room at about 7pm and said she didn’t need a scan because they knew it was the disease, they knew what was wrong.

He said, “They don’t do it at weekends as the unit’s closed so we’ll scan her on Monday – if she’s still here.”
‘She had a scan on the Monday which showed her lung had collapsed.

His reply was deeply offensive and insensitive. He might not have meant to hurt our feelings but he certainly did. It was crass,’ added Mrs Fordham, from Bletchley, Northamptonshire.

Paul Forden, chief executive of Northampton General Hospital Trust, acknowledged 11 direct mistakes relating to Mrs Cummins’ care.

Mrs Cummins, who was married to Chris, 76, had worked at Milton Keynes Hospital and St Stephen’s Hospital in West London.

She died on December 29.

Paul Forden, chief executive of Northampton General Hospital Trust, acknowledged 11 direct mistakes relating to Mrs Cummins’ care.

Of the remaining complaints, he apologised to the family for their concern over perceived failures.

His most striking admission relates to Mrs Cummins being left on the floor for 15 minutes, unable to reach the call alarm.

‘It was unacceptable that a call bell should be left out of a patient’s reach.

It was accepted that best practice was not followed by the nurses with regards to the appropriate access to her call bell and for this I am sincerely sorry.’

Read more: http://www.dailymail.co.uk/news/article-1304905/Well-cancer-scan-Monday–shes-alive-Agony-family-dying-grandmother-devoted-life-NHS.html#ixzz0xDcLazAF

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Every woman is devastated when she hears the news she has breast cancer, some, who are the ‘Lucky’ ones may only lose a small section of breast or they may lose the breast completely.

The actor Michael Douglas, has just been diagnosed with throat cancer, and has been on my mind for the last couple of days.

Michael, a very talented actor , extremely wealthy with a beautiful wife, has everything money can buy.

BUT Michael now has cancer and for all his wealth and his wonderful homes , nothing will save him for the treatment he must now face to save his life. Michael, will go through chemotherapy followed by radiotherapy, his skin will be black and burnt from the radiation, he will lose his voice his wonderful voice may be lost forever.

I found an article in the Daily Mail this morning written by writer Nigel Smith.

Nigel explains the nightmare Michael has yet to face.

Michael Douglas has one of the most recognisable voices in the world. It is smooth, powerful, masculine. It can seduce, comfort, frighten.

It can make you like him, it can make you laugh. It is a large part of his formidable acting talent that has seen him scoop one Oscar and be hotly tipped for another.

Yet now, following the revelations he has a cancerous growth in his throat, he is threatened with its loss.

Vulnerable:

Michael Douglas is threatened with the loss of his powerful voice due to a cancerous growth in his throat
I’m not a hollywood star; I’m not even an actor. But I do know what agony Douglas must be going through right now. Because losing my own voice was one of the most distressing things that has happened to me. And, to be honest, I’ve had quite a few horrendous things to compare it with.

Think about it for a moment. I’m not talking here about losing your voice for a few days – the result of a sore throat, perhaps, or cheering too loudly at a football match. I mean losing it for weeks, months, years, perhaps even for the rest of your life.

Imagine if you couldn’t ever talk again, how devastating that would be.

‘It makes you feel less than human’: Nigel Smith went through months of treatment after loosing his own voice
It’s the sound of our friends’ and family’s voices that we often love most about them.

From your mum singing you to sleep, to your children’s laughter, from your partner’s words of affection, your teacher’s praise, your friends with their support,
comradeship or comfort, their voice is what makes them most human, what connects them to you.

To lose that connection is a terrible thing. It can make you feel less than human. When it happened to me – almost overnight – it cut me off from society more completely than being forced to use a wheelchair or losing the use of the left side of my body.

In November 2001, aged just 36, I suffered a sudden onset of a brain lesion in my medulla (the brain’s signal box). Although there was nothing wrong with the thinking part of my brain, bits of me kept shutting down; my legs, my eyes, my arms, my ability to swallow. And my voice.

My tongue was paralysed and my vocal cords frozen open. It took a lungful of air to say one word, which was monotone, lifeless and almost unintelligible. I was rushed to Charing Cross hospital, West London, where, despite a variety of treatments, my condition deteriorated.

This was made more frightening as I became less and less able to communicate with the doctors and nurses. The loss of my voice made me feel vulnerable and alone. My wife Michele became my voice in the hospital, and to a certain extent it’s a role she still takes on today.

After two weeks on the wards I was admitted to intensive care, where I remained for several months. What was left of my speech was taken away during the emergency tracheotomy I underwent to enable me to breathe on my way to intensive care.

A small incision was made in my neck and a special tube inserted beneath my vocal cords. It protected my airway and enabled an artificial ventilator to breathe for me, but I was now unable to speak at all.

Over the following days, as I began to improve, I had to adjust to my new, voiceless world. And to be honest, it was a hell of a shock.

It was soon clear that people think if you can’t speak, you can’t hear. Or understand. Various doctors would talk over me, or bend down, close to my face, and
talk very slowly and loudly. like. I. Was. An. Idiot. Child.

Since I was still able to hold a pen, I soon learned the power of the written word. One very shouty, horsey-faced consultant was at my bedside one morning, pontificating noisily to her gaggle of juniors. I began to write, very slowly and deliberately. Finally, I held up the pad. It read: ‘Oy! I’m down here. And I’m not bloody deaf.’

She was much better after that. But as the weeks wore on, there were many times I ached to have my voice back. Even for just a moment. So on my first Christmas Day in hospital, I insisted I came off the ventilator for one minute just to wish my family a croaky, wheezy, ‘Merry Christmas’.

I probably sounded like Frankenstein’s monster after a night on the tiles, but it was a joy for my family to hear.
Slow rehabilitation followed; I saw a series of speech therapists (the collective noun is a ‘dribble’).

My right vocal cord started vibrating again and surgeons injected a kind of plastic into the paralysed left cord to plump it up and improve breath control.

Devastating:

Like Nigel Smith’s wife, Catherine Zeta-Jones may have to act as her husband’s interpreter during his recovery after surgery for a cancerous growth in his throat

After six months I didn’t need to write sweary notes to doctors so much; I could curse out loud again – albeit only for a few wheezing words. As for anything resembling a conversation? Forget it. And so I had to adjust to being voiceless in the wider world.

Out in town, first with a wheelchair and then a Zimmer, then a stick, I was amazed at the reactions I got.

The same people who would be sympathetic to almost any other certain disability – such as being unable to walk – would get angry, impatient and frustrated when they couldn’t tell what I was trying to say.

Unfortunately, the view that I must be deaf as well as dumb was to be found in shops, ticket offices and cafes everywhere. I still have an irrational hatred of the Royal Mail after several horrible encounters in my local post office, when counter staff, unable to make out what I was saying, simply walked off rather than try to understand what I wanted.

Once, they put the ‘position closed’ sign up! Today, when the postie turns up, it’s not only the dog that wants to chew his leg off.

Fed up with being treated as subnormal, I began to stay indoors, to shop online. To retire from life. I wasn’t going out, wasn’t seeing friends, wasn’t ‘networking’.

As for work, just before I was ill, I lost my job as a TV producer. Now, without even a voice to speak up for me, I didn’t think I’d ever have a chance of getting another job.
I was even becoming withdrawn from my family.

I discovered a talent that many disabled people have, of writing ourselves out of normal life, writing ourselves off. And it was my lack of speech that held me back from fully joining in again.

It was as if I was a spectator in the world, rather than a part of it.

Today, almost a decade on, my voice is much improved and I’ve dragged myself back into the world, but I’m not quite there yet.

I don’t go to the pub much any more, not because of the fact I can’t swallow, but because I find it difficult to make myself heard over background noise. What’s the point of going to the pub if you can’t talk when you get there?

On the plus side, relying on a keyboard or pen to communicate has opened up a new opportunity for me as a scriptwriter.

I now write a comedy series for BBC Radio 4 called Vent, about a man in a coma. Where do I get the ideas from?
The actor who plays ‘me’ is Neil Pearson. In the last series, Neil took voice lessons in how to sound like I did in the early days of my recovery.

When I heard him speak in character for the first time, it shocked me.

It was accurate, and it was frightening. It was flat, lifeless, without personality. It was almost inhuman. Part of me understood why those post office clerks ran away.
I do miss my old voice. It wasn’t as mellifluous as Richard Burton’s, as powerful as Churchill’s, as musical as Van Morrison’s – or as lucrative as Michael Douglas’s. But then again it wasn’t as annoying as Alan Carr’s, either.

When I lost it, I felt like I had lost my ‘self’. If the eyes are the mirror to the soul, then your voice articulates that mirror. It is who you are. And in some cases, like for Michael Douglas, it is also their livelihood.

But take it from me, whoever you are, you should treasure your voice every day that you have use of it.

It might not be your livelihood, but don’t underestimate how we, in our ordinary, non-starry lives, are also actors, politicians, comedians.

When we negotiate the minefields of the office, or try to convince the kids to do their homework; when we try to make our family and friends laugh, or to get strangers to like us; when we go about our ordinary, daily business, we’re all of these things and more.

Yes, losing your voice feels like a terrible loss. But I hope that Michael Douglas can learn – as slowly I have learned – that it need not make you any less of a person.

Read more: http://www.dailymail.co.uk/health/article-1304570/No-wonder-poor-Michael-Douglas-looks-scared-When-I-lost-voice-Id-lost-soul.html#ixzz0x7oVEIDQ

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The question was heart-breakingly blunt. ‘Am I going to die Mummy?’ Ellie Othick, then aged 12, asked her mother.

Heather took a deep breath and replied: “Some people die of cancer, but lots of people survive it. Would it make any difference to you if someone was to say you only have 18 months or 18 years to live or you will live to be 100?’

Ellie simply smiled at her mother and said: ‘I just want to be happy.’

In fact, Heather knew her daughter’s brain tumour was terminal. But she decided to hide the truth from her – a decision, she is convinced, that helped prolong Ellie’s life.

Difficult decision:

Heather chose not to tell her daughter Ellie, who died aged 14, that her condition was terminal
‘Ellie defied all expectations, surviving nearly three years after her initial diagnosis,’ says Heather. ‘The doctors were astonished and said it was extremely rare for patients with this type of tumour to live longer than six months.

‘I’d like to think the reason for this was Ellie’s incredible joy for life and because we did not extinguish this by telling her she was dying.

‘Ellie packed more into those precious three years than many people do in a lifetime,’ she adds. ‘We made her life as wonderful as possible and there was lots of fun and laughter and good times.’

None of that seemed possible when the family was first told Ellie was dying, a moment Heather recalls in desperate detail. At the time, Ellie was recovering from a seven-and-a-half-hour operation to remove what doctors suspected was a benign brain tumour, the cause of her recent seizures.

Heather and her second husband, Jason, were awaiting the results of the biopsy. With them were Ellie’s father Paul and his wife.

‘We were not going to take away her childhood; we were going to make her remaining time as carefree and wonderful as possible’
‘The consultant said Ellie had an inoperable malignant tumour and it was terminal. It came as a complete bolt out of the blue,’ recalls Heather. ‘I heard a terrible, anguished cry; and it was several moments before I realised it was coming from me.

‘We were devastated. The hardest part was Ellie and her siblings were waiting for us in a nearby room. We spent a long time crying and then, somehow, managed to pull ourselves together to face the children. But we all agreed there was no way Ellie should know she was dying.

‘We felt if she knew her condition was terminal, she’d give up hope and become scared, angry and upset. We were not going to take away her childhood; we were going to make her remaining time as carefree and wonderful as possible.

‘The drive home that day was the longest journey of my life. Thankfully, I was at the front and Ellie, sat in the back, couldn’t see my face.

‘When she asked if she had cancer I told her the truth – that, yes, she did have cancer. But then I explained that if there was anything she wanted to know, just to ask me. I was blessed because this answer satisfied her and she didn’t need to know any more.’

Sitting in her sunny living room in a village near Scarborough, North Yorkshire, it is clear Heather, who has two other children, Phil, 17, and Phoebe, four, is struggling to come to terms with Ellie’s death earlier this year.

‘Ellie was wise beyond her years, mischievous, full of fun and laughter. We were very close – she was my little helper, my little friend,’ says Heather, with tears in her eyes.

The first sign of a problem came in February 2007, when Ellie was 11. Heather’s husband, a self-employed roofer, was working away from home.

‘Ellie said she wanted to sleep with me. Normally I would have said “no”, but for some reason I let her. During the night, she woke up feeling hot and unwell, but went back to sleep. At 5am, I awoke to find her jerking in spasms.

‘I was terrified and called the emergency services, but when they arrived Ellie’s fit had ended. They said it was likely to have been caused by her body overheating. I wasn’t convinced and insisted she was checked out at hospital.

‘Ellie had another fit as we arrived. I was beside myself with worry, but the doctors reassured me it was probably epilepsy.’

Ellie was discharged within 24 hours and sent for scans. Several days later, the consultant broke the news that she had a brain tumour and would need surgery.

‘He told us it was likely she’d had it from birth, but there was every indication they could remove it. Ellie took it all in her stride,’ says Heather. ‘I explained to her as lightly as possible that she had a lump in her head which they were going to remove.’

Ellie’s operation was expected to take four hours, but lasted nearly twice as long. And then came the devastating news – a biopsy revealed it wasn’t a benign tumour: she had grade 4 malignant glioblastoma, a fast-growing terminal cancer. She’d need radiotherapy and chemotherapy to contain it and increase her life-expectancy.

‘There were times when I struggled to keep the terrible truth from her and sometimes I still question whether I was right’

‘Right from the start, I was determined that her illness would never take control. I thought “this illness cannot be our life – this just has to be something that is happening in our life”,’ says Heather.

But while this meant keeping the prognosis from her daughter, Heather made the difficult decision to tell Phil, then 14, that his sister was dying.

‘I didn’t want him to have any regrets, she says. ‘Ellie and Phil fought like cat and dog at that time, as siblings do – and I wanted her final months to be happy and carefree. His biggest fear was that Ellie would suffer.’

A few weeks later, Ellie started a gruelling six weeks of radiotherapy, involving a 140-mile round trip from her home in Scarborough to Leeds five days a week. She also started on a course of chemotherapy, which was to last 26 months.

Because she was able to take the chemotherapy orally at home, she continued to go to school.

‘We were so proud of her,’ says Heather. ‘Each morning she had radiotherapy and each afternoon she joined her classes; she even took her Year 6 SATs and passed them all.

Always thinking of others:

Even though she was having chemotherapy, Ellie led 70 cyclists on a seven-mile ride for charity

‘Although Ellie was seriously ill, the hospital managed to get her medication just right; enabling her to enjoy a good quality of life,’ says Heather. ‘While there were occasional bad days when she suffered seizures, we had learned to handle them by then.

‘For more than two years, Ellie was blessed with mostly good days and we really made the most of them – Ellie realised many dreams, including becoming a godmother to my friend’s baby and walking down the aisle with my sister as a bridesmaid.’

There was also a two-week holiday to EuroDisney paid for by fundraising from people in Scarborough. Throughout, Ellie had no idea she was dying, says Heather.

‘Not telling her was difficult,’ she admits. ‘There were times when I struggled to keep the terrible truth from her and sometimes I still question whether I was right.

‘Perhaps I should have given Ellie the opportunity to put her affairs in order, but I didn’t want her to be frightened. Family and friends supported our decision. Everyone pulled together to make the most of the precious time left.’

And there were good times, too. Photographs of Ellie’s cheerful, smiling face are scattered around the house – memories of happy days spent enjoying West End shows and shopping trips to London’s Oxford Street. But in May last year, Ellie started suffering excruciating headaches.

‘Ellie battled her brain tumour with such grace and dignity and was always so willing to help others’
A scan showed the cancer had grown.

‘When the consultant gently explained this to Ellie, she cried on her dad’s shoulder for five minutes. A few days later she told me: “Mummy, I’m going to live to 101, I’m going to open a nursery and run a business looking after little children.”

‘I was so grateful we had not extinguished that ray of light and hope.’

A few weeks later, Ellie expressed a wish to ‘give something back’ to the Scarborough community.

‘Even though she was having chemotherapy, Ellie led 70 cyclists on a seven-mile ride and in the afternoon she shaved 17 men’s heads at a sponsored head-shave. Two days later, she and her friends started baking cakes and, assisted by a local baker, made and sold 3,000. She helped raise £10,000 in just three days – she was over the moon.

‘People ask me how we managed to all stay so strong during this time,’ says Heather.

‘But the illness wasn’t about us. How could we fall apart when Ellie was battling her brain tumour with such grace and dignity, always so willing to help others?’

By July 2009, Ellie’s health was deteriorating. She had no energy and the pressure on her brain was making it difficult for her to read and write. She also developed facial seizures, says Heather.

But Ellie never complained, she took it all in her stride and spent many happy hours with friends craft-making.

‘One morning, I woke early and got into Ellie’s bed. She was sleeping so peacefully, I cuddled up to her and held her tight. I am not a religious person, but I prayed to all the people I knew who’d died to take care of my precious little girl. I needed to know she would be looked after and I would see her again one day.’

Despite her best efforts, Heather is convinced that towards the end Ellie knew she was dying.

‘Five days before she died, I told Ellie off for eating crisps at breakfast, to which she replied: “What are they going to do? Kill me?” I thought then: “She knows”.

‘I tried to encourage her to open up, but she just didn’t want to talk about it. I think she was just being strong for me, and that breaks my heart. I told her I was going to write a book about her and tell millions of people how brave she was and how she managed to raise thousands of pounds for charity. Ellie was touched that people would want to read about her life.’

On Valentine’s Day in the early hours of the morning, Heather tenderly kissed her daughter as she passed away at a children’s hospice.

‘Ellie always wanted to help others. Her last wish was for her organs to be donated, but because of her cancer that wasn’t possible.’

Heather is determined to keep the memory of her daughter alive, setting up a website to fundraise in her daughter’s name, with all proceeds going to a charity for childhood brain tumours.

‘Brain tumours have overtaken leukaemia as the leading cause of cancer death in children. Yet despite these statistics, brain tumour research is seriously under-funded,’ she says.

Heather draws comfort from Ellie’s school, Scalby School, where pupils and teachers have recorded a performance of Over The Rainbow/Wonderful World with images of the happy teenager (you can watch it on YouTube). All money from the sale of the song – which can be downloaded from Amazon and iTunes – will go to childhood brain tumour charities.

‘Nothing will ever bring Ellie back – or make it OK,’ says her mother. ‘But at least we are doing something about helping to fund research into this terrible illness. It makes the incredibly painful loss of Ellie slightly easier to bear.’

http://www.elliesfund.com, http://www.braintumourresearch.org

Read more: http://www.dailymail.co.uk/health/article-1303641/Would-tell-YOUR-child-dying-cancer.html#ixzz0wsTddGv3

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