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The death of a child: Out of despair comes hope
Robert and Carole Hughes faced every parents worst nightmare when their beloved daughter, Anna, died from a brain tumour three years ago but as Ann Molyneux-Jackson discovered, they have turned this personal tragedy into something positive to help other children affected by the disease.
Robert and Carole Hughes faced every parents worst nightmare when their beloved daughter, Anna, died from a brain tumour three years ago but as Ann Molyneux-Jackson discovered, they have turned this personal tragedy into something positive to help other children affected by the disease.WHEN Anna Hughes was born, her parents, Carole and Robert, were thrust into a world of changing nappies, sterilising bottles and sleep deprivation that they thought they had left behind many years before.
Anna made her unexpected entrance into their lives when their elder daughter, Sara, was a teenager and some time after the couple had been told they couldn't have any more children.
"Anna was a surprise baby," said 52-year-old Robert.
"Her mum didn't know she was pregnant until 24 weeks, and her sister, Sara, was 13 at the time.
"She came into our world like a whirlwind. She was a surprise, but a welcome surprise."
"We were an exhausted mum and dad who had settled down to one child and a dog, and were thrown back into a world of paddling pools and nursery parties.
"She was a lively character, full of energy and she didn't sleep much."
Today, looking back, Robert and Carole (48), who live in Lattimers Paddock, in Pilsgate, near Stamford, find it hard to remember what Anna was like in those early days and months of her life.
Their overriding memories of their beloved younger daughter are of her having to endure gruelling chemotherapy, of how bravely she coped with losing her hair and how she never complained when she was having to be fed through a tube.
When she was two-and-a-half, Anna was diagnosed with a brain tumour, and tragically, like many other children who are struck down by this horrible, debilitating disease, she was to lose her fight for life. In Anna's case, just 15 months later.
Inspired by her brave fight, Anna's family has set out to make a difference to the lives of these children.
They set up the charity Anna's Hope almost three years ago to raise money for a specialist nurse to support children with brain tumours and their families and to help with the rehabilitation of those youngsters who survive. Eventually they want to put money into research into the causes, treatment and cure of childhood brain tumours.
"It is just remarkable how Anna coped with cancer, it knocked her down and she just got up again," said Robert proudly.
"She was attached to a pump where she was fed for 12 hours a day, and she lost all her hair, but it didn't bother her one jot.
"She didn't like to see other children suffering and would comfort them, and if her mum was upset she would tell her not to worry."
Anna's parents had noticed her head was slightly to one side and that she had slurred speech, and had visited the doctor several times before their daughter was finally given a CT scan at Peterborough District Hospital, which confirmed that something was wrong.
An MRI scan at Addenbrooke's Hospital, in Cambridge, revealed that there was a tumour at the back of her head and down her spine.
Anna then had a seven-hour operation to remove a tangerine sized growth, known medically as a baby brain tumour and to Anna as "a nasty lump in her head", which had wrapped itself round her brain stem like ivy around a drainpipe.
Within four weeks she had started what was to be 13 months of chemotherapy where toxic drugs were pumped into her system.As Anna grew from a toddler to a little girl, she was spending every other week at Addenbrooke's Hospital, mostly in the company of adults.
"She became mischievous, she liked having secrets with grandma and dressing up as a fairy or a nurse or just putting a hat or silly things on," said Robert, a general manager for the Mars food business.
"She was a very bright girl so we spent our time trying to keep her mind active with role playing. She would wake up at 5am and say, 'what are we going to do today?'.
"She knew that she was ill, she was bright enough to know she was different from other children, but that was her way of life and she didn't once complain."
A scan after Anna had completed her treatment showed the cancer had changed from a slow to fast growing tumour and there was nothing more that could be done.
"There was no hope, absolutely none," said Robert.
"We were told on the Wednesday, and on the Monday she passed away."
Anna died on May, 1, 2006, aged three years and eight months.
As they struggled to come to terms with their grief, Carole and Robert decided they wanted something positive to come out of the loss of their little girl.
"Brain tumours are the biggest cancer killer of children and young people, with more than 350 children diagnosed each year in the UK, resulting in more than 100 deaths, and those who survive need lots of rehabilitation and support," said Robert.
"If you compare it to other cancers like leukaemia, for children who survive, life can go back to normal, but with brain tumours, there are the consequences of what the tumour has done to the brain, and what the operation and radiotherapy has done to a brain that is growing.
"It's different with an adult because their brain is fully developed. Children can lose their sight, hearing and balance."
Just before Christmas last year, Robert and Carole were able to give 150,000 raised by the charity to fund an Anna's Hope nurse called Alison Mitchell for three years.
Alison will share the heavy workload of Anna's nurse, Sharon Taylor, known as Harry, who is based at Addenbrooke's, in providing support to hundreds of families of children and young people with brain tumours across the East Midlands including Peterborough, Stamford and the surrounding area.
Harry was with the family all through Anna's illness, and her invaluable help included working for days to find a speech therapist to help Anna swallow and supporting the family so they could care for her towards the end of her life.
Both women are paediatric neuro oncology specialist nurses who understand about cancer, its treatment and the brain, but there are very few people in these posts across the country.In fact until now Harry's workload has been so great that she has only been able to provide advice and support for families and children during treatment.
The appointment of Sharon, who also happens to live in Stamford, means this will change and the nurses can also work together on helping and co-ordinating rehabilitation support during treatment, and after a child has been cured both at the hospital and in the community. Sharon's post will be funded by the NHS after three years.
"Some children need help with walking, others may need emotional support," said Robert.
"Anna couldn't swallow and had to be fed through a tube. Her balance was very poor and she had double vision, so we had to work with an eye specialist to train her muscles to go straight and she had to wear a patch over one eye.
"She was also going deaf in one ear because the tumour and the surgery had affected the central control system in her brain. With a nurse alongside her she was able to start walking properly again, her eye was going straight and she was eventually able to start swallowing again.
"The nurses will also go to schools to advise teachers and the other pupils about the child's treatment and how they should support the child. Some children may never be able to go to school again, but we can help them to walk a bit better and feed a bit better."
The charity also hopes to provide help for children or young people left severely mentally and physically disabled by their illness.
Robert and Carole's dream is that there will eventually be Anna's Hope nurses in every region of the country so many more children who are cured get the support they need.
A wonderful way to remember the daughter they loved so much, but lost so tragically young.
For more information, visit www.annashope.co.uk.
Schools challenge for fund
Among the events being held to raise money for Anna's Hope is the Perkins Great Eastern Run 2009 Schools Challenge.
The challenge will see prizes up for grabs for the school which enters the most pupils into the 4k fun run, and the school which raises the most sponsorship cash for the charity.
A sponsored cycle ride is taking place at Rutland Water on Sunday, August 23.
Robert Hughes has pledged a 1,000 donation to Anna's Hope if the cyclists can cover a total of 2,500 miles.
"Our philosophy on fund-raising is that, where possible, those who raise funds should also get something back," said Robert.
"So if you go to our annual charity ball each May, you will have a great time. If you enter any of our activity events, whether it be the Rutland Walk, Cycle Challenge or The School Challenge in this year's Great Eastern Run, you will get fit, achieve a personal goal and have some fun with your family and or friends."If you adopt us as your charity of the year, you will build a strong sense of teamwork as you get behind a cause which is local and you see where the money is going."
Robert has previously cycled from Land's End to John O'Groats to raise money for Anna's Hope and had intended to run the London Marathon this April for the charity until his attempt was thwarted by injury.
"Businesses and the local community have really got behind us," said Robert.
"Without them, we would not have achieved what we have so far."
Anna's Hope is also trying to give some of the children and young people diagnosed with a brain tumour some happy times through contacts they have made, or people who have got in touch with them.
The charity received 100 free tickets for the children from Addenbrooke's Hospital to come with their parents and siblings to the Holiday on Ice at the East of England Showground in Peterborough.
"For a boy called Josh, whose brain tumour causes 100 seizures a day and who had not spoken for months, we arranged a trip to RAF Cottesmore," said Robert. "He had a terrific day and he spoke at the end of the trip by saying thank you."
For details and entry and sponsor forms for The Perkins Great Eastern School Challenge on October 11, call Nicky McCready on 01733 747474, or e-mail thegreateasternrun @peterborough.gov.uk
For entry forms for The Anna's Hope Cycle Challenge at Rutland Water on August 23, e-mail admin@annashope.co.uk or pick up a leaflet at Rutland Cycling.
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