How a Clic Sargent home is where the heart really is
Andre Johnston, from Londonderry, tells how the charity provided a vital sanctuary when daughter Alexandra was undergoing cancer treatment in Belfast, 70 miles from where they live.
Families facing the agony of watching their child battle cancer are having the added burdens of financial pressures and travel worries lifted with the opening of the first of two Home From Homes in Belfast.
Thanks to the generosity of the public - and Belfast Telegraph readers - Clic Sargent managed to meet its £3.7m target to build the two sanctuaries - £50,000 of which was raised by our readers during a special Belfast Telegraph Christmas fundraising appeal.
Paul's House, the first Home from Home in Northern Ireland, opened in February 2014 directly opposite the Royal Victoria Hospital in Belfast and has so far served as a welcome refuge for 93 families.
The charity's second Home from Home is within walking distance of Belfast City Hospital and its construction and outfitting is expected to be finished before the end of this year.
Facilities include five large en suite bedrooms, a shared lounge and kitchen space, a quiet room, a young person's room, a relaxing outdoor space and a roof terrace.
Nadine Campbell, area fundraising manager for Northern Ireland, thanked everyone who contributed to the appeal and explained just how important the facility is.
"Families in Northern Ireland make an average round trip of 95 miles, up to five times a week, to access the cancer treatment their child needs," she says.
"This puts a big financial and emotional strain on them with the cost of travel and time spent away from home and other family members. The Homes from Home go a long way to alleviating some of these concerns."
Few cases could illustrate the significance of the service more than that of the very first family to use it - the Johnston's from Londonderry.
When their 12-year-old daughter Alexandra was diagnosed with cancer in August 2013, Karen (48) and Andre Johnston (49) could never have known the pressures that lay ahead for them. They spent an anxious year watching Alexandra fight for her life after a grave Grade four cancer diagnosis. But as well as their overwhelming fears for their little girl, the fact that they lived 70 miles from the hospital brought a whole other set of challenges.
With four other children at home - Callum (8), Ryan (10) Danica (24) and Carly (22) - the family was literally torn apart for the first six months of Alexandra's treatment before Paul's House opened and they found a refuge where they could all finally spend time together.
The costs of travel, daily car parking and food also placed a massive burden on their outgoings, with Andre describing those first six months as "financially horrific".
"When you are thrown into that world it is a nightmare, there is no other way to describe it," he says.
"There is just disbelief and then you go into a wee bubble because you are so frightened and overwhelmed. Alexandra was so strong from the start that she really helped us all through it.
"We had to leave the two boys a lot and fortunately Danica was still at home, but it wasn't fair on her or the rest of the children as Alexandra is their sister and they were worried, too.
"We never left Alexandra and took it in turns to stay with her. I was working full-time and couldn't get time off, which made it very hard.
"It was an hour and a half's drive to the hospital every day and the cost of petrol, then food and car parking all mounted up."
The family estimate that it cost £15 a day just for car parking and food so that one parent could be at the hospital with Alexandra.
With Christmas coming and the extra strain that puts on finances, it was a very worrying time for Andre, who worked as a head chef in a local hotel. Andre also juggled his full-time job with his shifts at his very sick daughter's bedside but eventually the strain became too much and he had no choice but to give up his job.
"I was working 12-hour shifts and then having to travel to Belfast to hospital," he says.
"The extra costs made it financially difficult, as on top of the petrol and car parking and food costs, I still had to worry about money for the house, bills and Christmas.
"Work didn't give me any time off so I used my annual leave at first. I got through four months until I got Christmas over us and then I couldn't do it anymore.
"That was a big decision as I have never been without work. Thankfully I am employed again but it was tough living on benefits.
"When you have a child who is as sick as Alexandra was, you don't expect to have to cope with all those other worries and looking back now I wonder how we did it.
"The first six months was a terrible struggle so when the Home from Home opened we really did appreciate it and it made all the difference in the world to us."
Little Alexandra, now 13, is a vivacious child who, when diagnosed with sarcoma cancer, faced it with a courage and cheerfulness which amazed medical staff and kept her whole family's spirits up.
In hospital she became known as "the beacon of the ward" because of her bright smile, and her doctors described her as an inspiration to other young cancer patients because of her positive approach and her motto "I'm gonna kick cancer's butt." She endured a tough year of surgery and treatment before being given the wonderful news last July that she is in remission.
Sarcomas are rare cancers that develop in the muscle and tissues. The causes are unknown and tragically the chances of it returning are very high.
The first sign that all was not well with Alexandra came when she hurt her ankle while jumping on a bouncy castle at a friend's party in May 2013. She soldiered on and continued to play sports so her parents had initially no cause to be alarmed. A few weeks later, though, she was staying with her grandparents when she woke in the middle of the night in severe pain. Her grandparents took her to A&E in Coleraine where she was diagnosed with an infection in her ankle.
The family had private health insurance and decided to go for a second opinion at the Ulster Independent Clinic in Belfast. Doctors there arranged for an MRI scan and the family were told Alexandra had a floating bone in her ankle. She was referred to the Royal Victoria Hospital in Belfast, where they put her leg in an air boot and gave her crutches.
Shortly after she was enjoying a holiday in Donegal when she experienced severe pain in her back and neck and swelling in her leg. Alexandra's granddad was due to go to the Ulster Independent Clinic for a routine heart check-up and decided to bring his granddaughter along with him. A bone specialist took the boot off the child's ankle and sent her immediately to the Royal Victoria Hospital with a suspected tumour.
A full body scan later revealed that the child's body was riddled with cancer. She had a tumour the full length of her leg, one in the back of her skull, one in her shoulder blades and cancer in two of the vertebrae in her spine, as well as nodules in her lungs. Alexandra was given between just three and six months to live. Chemotherapy started 10 days later.
Terrified for their daughter and refusing to leave her side the family's tough journey began. It was around this time they met a social worker with Clic Sargent called Brigid Turpin.
Andre says: "Brigid was great and pointed out what was available to us financially and we were able to get some grants to relieve the pressure.
"The charity even helped us to understand medically what was happening with Alexandra. They were an amazing support.
"A girl called Gillian Thomas took over as social worker when she returned from holidays and she was an absolutely fantastic support.
"Alexandra and Gillian struck up a great relationship and Alexandra felt she could talk to her about anything."
Alexandra had to endure six cycles of chemo and spent 79 days in hospital in Belfast before getting home for a few days.
She was allowed to spend Christmas at home with her family and on January 29 of last year, she returned to hospital to face six weeks in isolation for high dose chemotherapy. Such was the strength of her fighting spirit that she was discharged after just 24 days.
Her dad says: "The hospital staff were amazed that she bounced back so quickly. Everyone said that Alexandra had a great attitude - she was even administering her own meds herself."
Paul's House opened shortly after and the family were able to stay there with Alexandra.
After six months of sleeping on a camp bed on the floor in her hospital ward, both Andre and Karen were overjoyed by the privacy and the sense of normality the house gave them.
"It was an unbelievable godsend. I went straight to Tesco and bought myself a pasta bake," Andre says.
"It was heaven to be able to eat something normal and to be able to put the kettle on and make a cup of coffee. By this time the simple things, like being able to have a shower, really meant so much.
"Being able to stay in the house made that hard cancer journey so much easier and we were able to have the boys down at weekends and spend time together as a family and get a bit of normality back again.
"I hope people know how much it meant to us. The staff are fantastic. It only opened six months into Alexandra's treatment and I wish it had been available from the start.
"Staying at Paul's House gave Alexandra's body a chance to settle before radiotherapy, which began on April 14 in Belfast City Hospital."
Alexandra is back at school in St Cecilia's in Londonderry. She faces check-ups every six weeks which will change to every six months, after a couple of years.
The risk of her cancer returning is something the family find hard to live with, but again Alexandra's positive attitude is helping carry everyone through.
"It is scary to be told there is a high chance it could come back and it is hard to get on with life as that is always in the back of your mind," Andre adds.
"Alexandra is terrific. She just gets on with things and her whole attitude has kept us going."
10 young people a day given shock diagnosis
Today, 10 children and young people in the UK will be told the devastating news that they have cancer.
Treatment normally starts immediately, is often given many miles from home and can last for up to three years.
Being diagnosed with cancer is a frightening experience and the emotional, practical and financial implications are intensely challenging for the whole family.
Clic Sargent is the UK's leading cancer charity for children and young people, and their families. It provides clinical, practical, financial and emotional support to help them cope with cancer and get the most out of life.
The charity is there from diagnosis onwards and aims to help the whole family deal with the impact of cancer and its treatment, life after treatment and, in some cases, bereavement.
The Homes from Home appeal may have reached its target but the Clic Sargent Northern Ireland fundraising team is still in place, appealing for your support to continue providing these vital services to children and young people with cancer.
This core support includes the Homes from Home, Clic Sargent social workers, grants, holidays and information services.
The charity funds what is the only specialist social work provision for children and young people with cancer in Northern Ireland which they deliver in partnership with the Belfast Trust.
To find out how you can help support children and young people with cancer, and their families, contact the Belfast Fundraising team on 02890 725 780 or email: firstname.lastname@example.org.