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Rosie’s Story

At Rosie’s 11th birthday party she stood on a picnic table, her trademark red cap on backwards, and said to her friends “As you all know I’m off to Bristol tomorrow, I don’t know what’s wrong with me.”

We ended up belting out the tune ‘stand by me,’ which became her theme song.  She really put her own stamp on it, and we had to sing it at every family occasion. When we hear it now, it fills us with pride.

She had complained about pains in her legs before, but the doctor always said it was growing pains, and that we were being paranoid.

But a locum doctor found a lump in her pelvis.

Rosie was really outgoing and definitely a tomboy. She would bite her older sisters, Charlie and Amy if they called her a girl, and played in her primary school football team. She gave everything a go, from diving to going to work with her granddad Keith. She always gave teh appearance of a girl who would be determined to achieve what she wanted in her life. She was quite a character before she was poorly, and we think that helped with the treatment. Because she was so young, we think she accepted being diagnosed with cancer better than if she had been a teenager. That is why she felt so strongly about the charity and was always raising money. She was a very giving person, she wasn’t selfish at all. At first she would wash cars in the cul de sac where we lived, between her cancer treatments.

The only thing she got really upset about was losing her hair. It was the first and only time she cried.  She never complained, she was always smiling and always laughing. She wasn’t one for self-pity. Years later she was prepared to do a trial drug because they told her she wouldn’t lose her hair – she’d lost it four times before.

The first time she lost her hair she told her mum Tina to go downstairs and have a cup of tea. When she came back up it was all cut off. She and her dad Steven would paint her head so it looked like she had hair.

She craved normality and all she ever wanted growing up was to experience life. We have a large and close family and she loved her family roots. In hospital she always used to say, “I want to be home on Saturday, I’ve got things doing.”

We spent months in hospital in Bristol where she had two courses of chemotherapy. At first they said she’d need six treatments, but she actually had sixteen. We were really scared to come home because we felt safe in Bristol. We didn’t realise there was a proper CLIC unit at Treliske. Then she had an operation to remove part of her pelvis and take a piece of her calf bone to create scaffolding in her pelvis. It was a seven-hour operation and when we eventually got a shout to come back, we asked how she was. “She’s in the recovery room eating toast” said the nurse. We couldn’t believe it! She never lost her appetite. Her cancer, Ewing’s Sarcoma, usually affects white male teenagers. It was known by doctors who had dealt with it successfully in the past. The cells are difficult to identify because they flow around the body in the blood stream before finding a bit of bone to bury into. What we had to contend with, even in Rosie’s remission, was wondering whether they had cleansed her body of it entirely. We were never going to know if it had gone or not. Eventually it buried its way into her skull, ribs and back into her pelvis.

The year after having her pelvis removed, when Rosie was 13, she was selected to go on a dream flight. A group of disabled children went on holiday to America for two weeks and she got to swim with dolphins, which was just amazing.

Rosie’s battle with cancer was really public and she was always in the local paper for her fundraising. We all had to be in Team Rosie for Cancer Research UK’s Peninsula Bike Ride the year after her diagnosis.  She raised nearly £1,800 – the most funds of any competitor. She spent part of her 13th birthday walking for Savannah, a seven-month-old girl who was battling leukaemia. And that year Rosie’s unrelenting spirit was honoured by the Cornish Gorsedd, which awarded her the Frank Pascoe Cup for courage and determination in the face of adversity.

Her uncle, Ben Quick and his Royal Marine colleagues took up the challenge of running from Penzance to London in just 36 hours. The £8,000 they raised paid for murals in the Sennen Ward for children at the Royal Cornwall Hospital. Artist Tim Wright created them, one of which included a picture of Rosie riding a dolphin, as well as brighter bedding, black out blinds and reclining chairs for parents. Everything she did was for other people, it wasn’t about herself. She worried about everybody else, even when she was going through treatment. I think she used to look around and see the other people suffering. In 2007 Rosie relapsed and we drove to Bristol to be told she had six months to live and they weren’t going to do anything, but she was offered a trial drug at the Royal Marsden. She said, “this may not work for me, but it might work for someone else and save their life.”

The tumour was growing rapidly and she had had enough. They offered her some more radiotherapy, which she did, but then said she didn’t want to do any more. She had a deep understanding of her fate then, which we didn’t know at the time.

She had become friends with film producer Simon Channing. He had seen pieces about her in the local paper and they used to sit down and chat. They spoke really deeply with each other. She couldn’t care less if you spoke with a plum in your mouth or were the commonest person ever. He wanted to do a blog about an adult going through cancer and a teenager, but he got so ill in the end it never happened.

She had nearly seven years of treatment; from the age of 11, it was all she knew. But she still lived her life to the full. She went out, tried drinking, smoking, went off with boys, but I’m glad we let her do that. Lauren experienced all that and it was part of being a teenager.

 

Rosie kept losing the use of her legs on and off, as tumours crushed her spine and paralysed her. But she danced until 5am at her 16th birthday party. I think God gave her grace that night, but from then on she went downhill. She told us she wanted to be cremated, so she could go up the chimney and travel all around the world. The day she died, snow fell, and it didn’t stop until 2am when she passed away. There were about 30 people in our house, it was bizarre that night how it all happened. She was quite spiritual, had a really strong belief in everything. We were all in her room the radio on, music playing, singing and dancing. People thought we were having a party. My sister was heavily pregnant and worried about the floor collapsing under us! It was really peaceful, it wasn’t stressful at all. Rosie was talking away, mumbling chatting and laughing. The vicar said she was an angel. I think we all believed that we had her on loan and she taught us all a very important lesson. We were very very privileged to have had her. We wouldn’t wish this on anyone, but we have met some fantastic people on our journey.

As tiny as Rosie was she filled the whole house and when she was ill our house was always full. Her personality shone through the most when she was poorly.

A lot of the nurses really struggled when Rosie died, because she was a huge part of their lives. There were 1,500 people in the church for the funeral. They all clapped and applauded her, chanted her name, people in Penzance said it was like Mazey Day. It was a celebration of her life, as tragic as it was, for a child who celebrated all of her life.

Since her death Charlie and Amy hold Rock For Rosie which raises thousands of pounds in her memory. Lots of her friends have been fundraising. Truro College has a Rosie Howis award for people who have overcome difficulties.

As old as she was, Rosie needed us when she was ill. That is why it is important to have a teenagers ward.

We cannot knock any hospital we went to, but Royal Cornwall Hospital was the best. It was not just the treatment, but the fact that we could go to the kitchen and make food. The staff were just unbelievable, as is the way the ward is run. Sue Turk ran that ward to perfection. Everyone knew their place and did their job, but did it with compassion and I didn’t feel like that anywhere else. Dr Gilberston is a very determined and passionate person who knows the job inside out. She wants to be the best and it comes from the heart. Nothing was too much trouble for the people who work there, even when they were understaffed.

For those nurses it wasn’t just Rosie. They deal with this day in day out, year in year out. They have lost children before Rosie and they have lost children after Rosie. They have got to go into work the next day, smile to the parents. To stay strong in a job like that, you have got to be a very special person. They made us feel special and put us at ease.

I will never run the NHS down. They were amazing.

Take a look at our ‘get involved’ page to find out ways to raise money through various events and sponsored sports or simply to donate money to LARF Cornwall.

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News and Upcoming Events

Rosie’s birthday coffee morning

Once again, there will be a coffee morning in honour of Rosie’s birthday, full of cake, tea and happy memories of Rosie.

This year it will be on Saturday August 5th, from 10am till 2pm, at Terry and Keith’s house, 29 Parc Letta, Heamoor.  read more…

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Registered Charity No: 1139337

Address: New Bridge Street,
Truro, Cornwall, TR1 2AA

Telephone: 01872 223163
Email: info@larfcornwall.co.uk