Archive for August 17th, 2010

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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