Brain Tumour Action at the Volunteer Recruitment Fair on October 14^th. An impressively well-organised event representing some seventy charities and with extra support and advice contributed by the Volunteer Centre, Edinburgh. There’s always work for interested volunteers so if you missed the Fair and would like to find out more then do get in touch.

Cate Devine, The Herald

A VISIT to the optician was the start of a journey seven-year-old Caleb Duffy could never have imagined.

Stephanie Duffy back home with Caleb. Picture Colin Mearns.

He had been suffering severe headaches for months that were so bad he was being sick. The family GP said it was a virus and prescribed antibiotics.

But the symptoms kept returning. So mother Stephanie took him to an opticians in Shotts, Lanarkshire, to see if he needed glasses. And it was then his life changed forever.

He was immediately referred to hospital and, within days, was diagnosed with a brain tumour sitting perilously close to his pituitary gland.

Stephanie said: “I can remember going to have the eye test and that our biggest concern was he might need to wear glasses which might be a problem for such an active member of the Celtic in the Community under-10s team.

“Little did we know that was the least of it. We were totally unprepared for this.”

Proceeds from the sale of The Herald 2012 calendar will go towards a charity that helped the family through the ordeal.

Caleb underwent a nine-hour operation at the Southern General Hospital in Glasgow to have his tumour removed. It was a high-risk procedure because of the tumour’s location and the neurosurgeons only went in as far as they safely could.

When he was brought out of sedation Caleb’s vision and movement were miraculously undamaged. But doctors had only been able to remove 75% of the tumour. He needed radiotherapy to shrink the remaining 25%.

However, the NHS only has access to Photon therapy which is risky for children at a certain age as it can cause collateral damage to the rest of the undeveloped brain. Proton therapy is much more precise – and much more expensive.

But the unexpected offer of a trip to the pioneering Proton Therapy Institute at the University of Florida, funded by the NHS, meant Caleb received the best possible treatment.

“The decision to go to Florida was massive for the whole family,” said his father Sean, group advertising director at The Herald & Times.

“We realised it could be quite disruptive, so we decided all five of us would go for the first month. I then returned home with our older sons, Saul and Reuben, and they were looked after by grandparents while I went back to Jacksonville for five weeks.”

Meanwhile, with his mother by his side, Caleb endured daily hour-long doses of treatment for 35 days except at weekends. He had a special head mask made out of mesh to enable his head to stay completely still. Not once did he opt for sedation or express fear or anxiety.

“I could not do what Caleb has done,” said his mother. “We are in awe of him. He is our hero.”

Since the treatment, the remainder of his tumour has neither shrunk nor grown. Caleb, now eight, and Stephanie returned home to Scotland in mid-June and his condition is being monitored.

He is mobile, although a combination of steroids and his compromised pituitary gland means he has put on weight and is not as tall as other boys his age.

His family are hugely grateful for the early diagnosis and the swift action of doctors. His first tests after visiting the opticians in January were at Hairmyres Hospital in East Kilbride. He then had a CT scan at Wishaw General before his surgery at the Southern and his ongoing care is being undertaken at Yorkhill Hospital.

Stephanie said: “Not knowing what’s going to happen is the most difficult thing. But we are very aware that not every child will get the same opportunity to receive Proton therapy as Caleb did.”

The family say they are taking things one day at a time and that, despite all he has endured, Caleb remains as sweet-natured as ever.

They also want to help the charity that helped them. Stephanie said: “We are keen to help Brain Tumour Action who raise awareness of brain tumours and the need for early diagnosis, especially in children.”

The irony of that trip to the opticians, which first alerted the Duffys to their son’s serious condition, is not lost on the family. Caleb, it turns out, has 20:20 vision and doesn’t need glasses.

Diagnosed with a brain tumour in 2008 after losing consciousness at Madrid Airport he subsequently underwent four operations to remove the tumour as well as undergoing radio and chemotherapy.

Ballesteros, who claimed 87 titles over his career, won the Open in 1979, 1984 and 1988 and became the first European to win the Augusta Masters in 1980, repeating the feat in 1983.

He also had a successful Ryder Cup career as both player and captain – playing in eight Ryder Cups before guiding Europe to victory over the United States as a non-playing captain at Valderrama in 1997.

But it was his bold and flamboyant style that made Ballesteros unique. He altered the previously rather staid image of golf and brought a whole new audience to the sport.

BBC golf correspondent Iain Carter said: “He played a fearless, exciting and charismatic brand of the game. It thrilled sport fans all over the world.”

After his diagnosis he established the Seve Ballesteros Foundation in partnership with Cancer Research UK to raise money for research into the disease. He described his battle with a brain tumour as “the hardest challenge of my life.”

Angie and Steff at Perth meeting Christine and Andrew

Andrew Sloan, whose cousin was diagnosed with a brain tumour twenty years ago, and his mother, Christine, met up with cyclists Angie White and Steff  Revelle just outside Perth at the end of the ninth day of their 970 mile ride from Land’s End to John O’Groats in memory of Angie’s brother-in-law who died last year of a brain tumour. Angie and Steff are raising money for Brain Tumour Research which represents nineteen brain tumour charities throughout the UK.

Andrew said:

“I think it is marvellous what Angie is doing and I really hope it helps to spread awareness of this terrible disease  which kills so many men, women and children.”

Angie White, 47, who lives on a narrow boat on the Kennet & Avon Canal at Great Bedwyn, near Marlborough, added:

“I have been surprised and delighted by the wonderful support I have had from so many people.  Everyone has been so shocked to learn the facts about brain tumours and I am really glad I have this opportunity to raise awareness as well as funds for a very deserving cause.”

It was the death last year of her brother-in-law, Malcolm Smith, from a brain tumour that inspired Angie to undertake this challenging venture.

Malcolm, who was married to Angie’s husband’s sister was an incredibly fit man until he was diagnosed with Non-Hodgkin’s Lymphoma in 2008.  He received treatment and was given the all clear but subsequently complained of ear-ache and a “droopy eye”.  When he was eventually sent for an MRI scan a brain tumour was diagnosed which very sadly was incurable.

The trip is taking Angie and Steff nearly two weeks to complete. En route, Angie is meeting up with representatives of brain tumour charities and support groups, as well as brain tumour patients, families and carers.  She hopes that her endeavour will inspire people to donate and that she will raise at least £5,000 for Brain Tumour Research of which Brain Tumour Action is a founding member charity.

Angie and Steff with Andrew

Place: Maggie’s Highlands, Raigmore Hospital, Inverness.

Meeting dates: To Be Confirmed

Contact phone number: Gus Ironside on 07827595855

Light refreshments will be provided and any reasonable travel expenses will be reimbursed.

Place: Ayrshire Cancer Support, 16 Portland Road, Kilmarnock, KA1 2BS.

Meeting dates: Thursdays; meetings are planned for the following dates:

Thursday 15^th December

Thursday 12^th January 2012

Thursday   9^th February 2012

Time: 2.00-400pm

Contact phone number: Gus Ironside on 07827595855

Place: Maggie’s Dundee, Tom McDonald Avenue, Ninewells Hospital, Dundee.

Meeting dates: The second Wednesday of every month

Time: 3.30-5.00pm

Contact phone number: Gus Ironside on 07827595855

Light refreshments will be provided and any reasonable travel expenses will be reimbursed.

Place: Maggie’s Fife, Victoria Hospital, Hayfield Road, Kirkcaldy, Fife KY2 5AH.

Date: The last Wednesday of every month (excepting the December meeting- further details available from the contact number below).

Time: 6.00-7.30pm

Contact phone number: Maggie’s Fife on 01592 647 997

Light refreshments will be provided and any reasonable travel expenses will be reimbursed.



The Duffy family were helped by Brain Tumour Action and The Herald has most generously decided to support us from the sales of their 2012 charity calendar.

Profits from the sales of  the calendar, which showcases the best of Herald readers’ pictures, will go to Brain Tumour Action.

For Caleb and his parents to support us like this is a wonderful gesture. It is a way of helping more people become aware of the problems facing children with brain tumours. There is a desperate lack of research and available funding.

The calendar is on sale now for £7.50 (inc p&p). Order on-line at http://login.heraldscotland.com/heraldcalendar/order.cgi or by phone (0141 302 7300) or by visiting The Herald offices at 200 Renfield Stret, Glasgow G2 3QB.

On the first Thursday each month (the next being 03/11/2011)

at
Helen Webb House,
35 Westleigh Road,
Leicester
LE3 0HH

Contact Brainwaves 07973 219 271 or Jo Featherstone 07534 227 963.

Or

email Jo.K.Featherstone@uhl-tr.nhs.uk

]]> http://www.braintumouraction.org.uk/2011/10/leicester-support-group/feed/ 0