Lanchester couple create charity after son's bone cancer fight

THERE are photographs displayed throughout Jane and Gary Nattrass’s house in Cornsay, near Lanchester, County Durham.

Jane Nattrass from Cornsay, Co Durham, pictured with son Henry Dancer who died of a rare disease

THERE are photographs displayed throughout Jane and Gary Nattrass’s house in Cornsay, near Lanchester, County Durham.

Most show the couple smiling or laughing with their son Henry Dancer.

Today would’ve been Henry’s 14th birthday but, he passed away on November 2, 2010, age 12, a year after his diagnosis with osteosarcoma, an aggressive form of bone cancer.

His mum Jane has, helped by stepdad Gary, devoted herself to setting up a charity in Henry’s memory.

Henry Dancer Days supports other families who have a child diagnosed with osteosarcoma.

Jane explained how setting up the charity gives them great comfort.

She said: “Henry was an only child and when he died our routine just disappeared.

“There was this life before and what do you do afterwards?

“Doing this charity helps and makes us feel like we’re doing something positive in his name.”

They are an upbeat pairing, but they are still working their way through such a massive loss.

Gary says: “Coping with anything this traumatic is a rollercoaster of ups and downs.

“People say, ‘how are you going to cope with the first anniversary of his death, birthdays and Christmas?’.

“But they’re actually easier to cope with because you’ve got a point you can build up to.

“It’s when you least expect it that it comes and bites you hardest.”

Jane adds: “It’s walking through Sainsbury’s with your trolley. You walk past the youth clothing section where you’d normally have a mooch and see if there’s a hoodie or something he’d like. Instead you have to abandon your trolley because you can’t cope with looking at the boys’ clothing.

“I’ve done that twice now.”

Jane, an arts consultant, 49, and Gary, 51, a freelance broadcast engineer, have since they set up Henry Dancer Days as a trust, already raised over £6,000 to support other children with the same condition Henry had. It is now on the cusp of being a fully-fledged charity.

Henry was 11 when he was diagnosed with osteosarcoma in November 2009.

Jane recalls: “He’d just started senior school, he’d done seven weeks and was complaining of a sore leg.

“At first I just thought it was growing pains but one Friday night I watched him limp home towards the car and decided to get it checked out.”

Things moved on quickly. Within a day the family had a possible diagnosis of osteosarcoma.

By Monday it was confirmed and Henry began chemotherapy the next week.

Jane continues: “It’s a cancer which makes bone. He had a huge growth around his left leg. We were told he had a one in 10 million case.

Jane Nattrass from Cornsay Co Durham whose son, Henry Dancer, died of a rare disease

“Our lives just completely changed after the day of diagnosis. No one could work, everything was focused on Henry’s care.

“It’s a very dark place which as parents you desperately don’t want to be in.”

The couple say they mainly “lived” at Newcastle’s Royal Victoria Infirmary and Freeman Hospitals. “We were there far more than at home”, Jane says.

Following his chemotherapy Henry had an operation where his leg was replaced from hip to shin to try and catch the cancer.

Gary says: “If this cancer has skipped within the same limb they’re 99% sure it’s gone to the lungs.”

He continues: “They did scans on the lungs and found a very small spot. In June, despite the chemotherapy and everything else, this tumour had grown quite radically.

“It had spread into his pelvis, lymph node system, into his chest. We were told his condition was terminal.”

Jane adds: “The terminal diagnosis was of course devastating, but because we were in the system by then, the language was used in such a way that you weren’t expecting it but deep down you kind of knew which way it was heading.

“We were told there was life before cancer, life with cancer and life after cancer. We didn’t get to the third stage.”

The couple say they can’t fault the treatment Henry received from start to finish.

Jane says: “Credit to the expertise at the RVI – they knew exactly what the situation was. They never got it wrong.”

During this time Jane says Henry was amazing.

She adds: “He made me so proud. He even tried to support me throughout his illness.

“He had a cracking sense of humour and he was incredibly polite to the point where he would thank other people for giving him injections. The nurses used to fight over who was going to nurse him because he was such a lovely patient.

“Initially I don’t think he knew what to make of it because he’d heard of Jade Goody and cancer and he knew she’d died of it. But also a friend of ours had cancer the year before and recovered very quickly so we tended to focus on that rather than Jade Goody.

“The words he said to me were ‘it just seems so wrong because one little cell went wrong’.

“But he was so strong. I remember when we were at the Freeman at the biopsy I heard him whispering to himself saying ‘I believe in myself, I can do this’.”

“He was a little fighter, a little star. He dealt with it very well and he never knew he was dying.” The couple discussed what to say if Henry asked if he was dying, and agreed they’d tell him. But, Jane says, “he never asked the question”.

“He kept on going but I think that’s because we made it look like everything was going to be OK. Everything was kept in a positive light, which was exhausting but necessary.

“Keeping that positivity up was hard. For my family, friends. You end up being the focal point for other people’s feelings and you can’t cope with them all because you’re trying to cope with your own and particularly Henry’s.

“That was tough but we got email and text networks going. We had to, otherwise my phone was going ballistic and I couldn’t cope with it. Although it was all concerned people with the best intentions.”

Henry kept upbeat right to the end. Jane laughs, “right until the end he was ticking off his Macmillan nurse the day before because she told him a rubbish joke about Newcastle and Sunderland”.

Henry passed away on November 2, 2010, at home.

Jane says: “We have a great community nurse system here and Henry ended up dying here in his own bed which is just the way we wanted it to be.”

Henry Dancer with stepdad Gary Nattrass

Jane set up Henry Dancer Days she says because other charities made such a huge difference to their own family life when Henry was ill.

She explains: “When Henry was ill we were supported by Josie’s Dragonfly Trust and Adele Pickering’s Trust, set up by families whose children have had cancer.

“Things were very difficult because we couldn’t work and to get that small amount of money through from a charity, there’s a moment of going “phew”, we can afford to take him to his favourite restaurant or out on a trip.

“Because of Henry’s condition he couldn’t travel by car. He needed to get ambulances to hospital and if we wanted to go anywhere we had to hire a disabled taxi.

“We were very, very lucky in that a lady in Corbridge, Elspeth Straker, lent us a fantastic car. Henry called it the bus. Her husband had died the year before and he was also a wheelchair user so she lent it to us.

“Henry could rarely go out because of all the treatment, which often left him open to infection so he couldn’t mix with anyone. So when he was well it was great to be able to jump in the bus and go somewhere he wanted to go.”

This help, Jane says, made a huge difference to Henry’s last days.

She comments: “So for other families who have kids with osteosarcoma I want to be able to support them to give them both that “phew” moment and also just give them a nice day out.”

Henry Dancer Days are working closely with children’s cancer charity Clic Sargent, who refer families to them so Henry Dancer Days can help with funds for trips out.

And the whole community around Lanchester, and beyond, have been involved in fundraising.

Jane says: “People have been brilliant all round. Doing runs, coffee mornings. We’ve a couple of girls arranging a ball at Beamish Hall. We’ve got Graeme Danby from English National Opera coming to do a concert in Lanchester this year.”

She continues: “Families deal with the loss of their children in different ways. I was in touch with Adele Pickering’s Trust and her mum and I offered some photos and information about Henry for their website as they supported us.

“She said to me ‘isn’t it awful that we have to do this’.

“But we agreed we’re both of a mind. We could lie back and say ‘isn’t it awful, I can’t cope’ or you try and make something positive out of it.”

Jane says Henry’s group of friends have been a great support too. She explains: “There was five boys who had all gone through school together.

“Their families have been very supportive and the boys are brilliant. On the anniversary of Henry’s death all the boys texted me to ask if I was all right.

“They are a cracking group of lads and continue to be in touch.

“That’s been a real comfort, seeing them grow, because Henry can’t.”

“We try and remain strong for other people as well because they don’t know where to put their grief or look sometimes.

“Some people will cross the road because they don’t know what to say, and that hurts. Some people burst into tears when you talk to them and you’re like, ‘don’t, you’ll set me off doing it’.”

“Henry would be proud of us doing this. Before he was ill he’d done a lot of work with the young people’s forum in Lanchester. He was very caring. I think he’d be saying, ‘well done mam’.”

For more information on Henry Dancer Days or to support the charity visit www.henrydancerdays.co.uk

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