Battle goes on for brave Jack

Feb 25 2008 by Audrey Barton, The Journal

NEWCASTLE United fan Jack Bryan loves to watch football.

The five-year-old also revels in collecting American cartoon Ben Ten figures.

His parents Claire and David are taking him and big sister Hannah, 10, to Disney World, Florida, to celebrate his sixth birthday on Sunday.

But the birthday is another milestone, as Jack, of Hilda Park, Chester-le-Street, leads a different life to a typical lad of his age.

He is fighting a life-threatening brain tumour, diagnosed when he was just two.

Mum Claire said: “We live a different life to most people. We live from scan to scan and as soon as we get some good news, we think ‘what can we do now’.” The family has been to Euro Disney in Paris, Disney World in Florida and took the children to Lapland last Christmas.

“It gives us something to focus on and enjoy together,” said Claire. The South Pelaw School pupil was diagnosed with a benign brain tumour at the age of two after he began losing weight and feeling exhausted. “He was very unwell. He was lying around and wanting to go to bed all the time,” said Claire. “He was only two and the doctors have said his headaches must have been terrible. But at that age, you can’t communicate.”

Claire, 33, a part-time civil servant, and 41-year-old David, who works for a chemical company, took Jack to their GP, who referred him to the University Hospital of Durham for tests.

Doctors warned them a brain tumour was the worst case scenario. It was months before a CT scan showed a benign tumour with a cyst attached to it on Jack’s brain.

“My husband asked if he was going to die and they said they didn’t know.

“It was terrible. The only relief was that as it isn’t cancerous, it won’t grow as fast or spread to other parts of the body. But it is still life-threatening.” The family was referred to Newcastle General Hospital where they were told their toddler son would have to undergo brain surgery. Surgeons were able to remove the cyst and most of the tumour and told the family it was highly unlikely it would grow back. “He was in hospital for 10 days which was awful. We thought that would be the end of it,” said Claire.

But around 18 months later the couple were devastated when a scan revealed the tumour was growing again. Jack had brain surgery for the second time in October to remove the tumour but again doctors were unable to take out all of it.

Now the family is playing a waiting game in the hope the tumour doesn’t swell, as radiotherapy cannot be given to children until they are eight unless absolutely necessary, as it causes so much damage. The alternative is 18 months of gruelling chemotherapy.

Claire, desperate for support, found the Rainbow Trust on the internet and the family has been to stay at respite centre Fernstone House in Hexham for weekend breaks. They also have a family support worker. “Being put in touch with other families going through this has been great for us and the children.

“It has been absolutely wonderful what they have done.”

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A special evening promised at ball

THE Rainbow Ball is taking place on Saturday, April 26, at The Hilton in Gateshead to raise much-needed funds for North East families.

Linda Squire, event manager, Rainbow Trust, which provides respite and support for children and families with life-limiting conditions, said: "Rainbow Trust relies entirely on voluntary donations and major fundraising events like the Rainbow Ball in order to continue providing vital services to families who have a child with a life-threatening or terminal illness.

"Anyone who is looking for a special evening should come along to our ball and have a truly memorable night while helping Rainbow Trust raise vital funds for families throughout the North East, North West and most recently North Yorkshire and Lancashire."

Past celebrities and performers include Girls Aloud, Liberty X, TV actress Denise Welch and TV actor Tim Healy, and ITV Loose Women presenter, Colleen Nolan.

Tickets for the event, taking place between 7pm and 1.30am, are priced at £120 per person, including champagne reception, a three-course dinner and entertainment throughout the evening. To book, call Linda Squire on (0191) 386-4400 or email linda.squire@ rainbowtrust.org.uk