Child cancer heroes to be honoured in naming of new facility

Reon McSherry (left) and older brother Ciaran.

And now CLIC Sargent is calling on the public to help name its new facility, which opens in Edinburgh this autumn.

The charity, along with long-term partner Crerar Trust, has launched a week-long online vote to name the home, which will provide free accommodation for young patients and their families near to the re-sited Royal Hospital for Children and Young People.

CLIC Sargent’s current Home from Home, CLIC Villa, has supported thousands of families since it opened in 1997.

More than 300 families have stayed at the house over the last two years, many for several months.

The new Home from Home, designed by LDN Architects, will be built on Old Dalkeith Road. It will have nine en-suite family bedrooms, as well as communal kitchens, laundry and social areas, helping families spend more time together and avoid often debilitating travel costs.

CLIC Sargent research shows children receiving treatment can face an average round trip of 56 miles to the Royal Hospital for Sick Children, Edinburgh, to receive treatment.

Four families who have experienced how vital CLIC Villa is have put forward suggestions to name the new home, based on their ‘cancer heroes’ who have supported them throughout their family’s cancer journey:

Each year around 300 children and young people are diagnosed with cancer in Scotland. During treatment, which can last up to three years, normal everyday life is turned upside down.

In Scotland, CLIC Sargent provides a range of services for young cancer patients, including clinical nurse professionals, social workers and financial grants.

The vote will run Monday 12 March to midnight on Sunday 18 March. The web link to vote is:

April’s House

Charlie Stevens, six, from Buckhaven, was diagnosed with stage four high risk neuroblastoma when he was just two and a half years old.

Charlie had been suffering from seizures from nine months and had been diagnosed with epilepsy, but his mum Evonne McKay knew something wasn’t right after noticing he kept falling on one leg.

When Charlie was diagnosed his family found it very difficult.

Evonne said: “The whole experience of his treatment was very stressful.

“It’s very hard and when you hear that your child has cancer, you are just stuck. You just think, what can I do? What did he do? Why did this happen?”

Charlie has two older brothers and the family struggled with the amount of time they would spend apart, which is why CLIC Villa made such a difference for them.

Evonne said: “CLIC Sargent is just wonderful, especially CLIC Villa, which is where I would spend a lot of my time.

“It was a great place. It made a huge difference for us and it saved a huge amount of expense.

“It makes such a difference when you know your child is safe and sleeping and you know that you can go off and put your feet up and have a rest.At one point in it all we couldn’t see any light at the end of the tunnel, but he got better and we are so happy that he is in remission,” she added.

On her pitch for April’s House: “We would like to name the house after our friend April. She has done a lot for us – giving us lifts in and lifts home, and always making us smile and laugh.

“Charlie adores her; he calls her Auntie April.”

Ian’s House

Ailsa MacGregor, 25, from Perth, was diagnosed with acute lymphoblastic leukaemia at the age of 17, just six weeks before her 18th birthday.

She said: “I knew something was terribly wrong when I was taken into the treatment room where my parents were already sitting and had obviously been crying. When they told me I remember crying and I didn’t take anything else in. I didn’t want to accept that I had cancer and I didn’t want to know anything about it.”

Ailsa’s treatment lasted a long two and half years. She struggled with the emotional impact of stalling at such a crucial stage of her life and found it very isolating.

Soon after starting treatment Ailsa was put in touch with a CLIC Sargent social worker and her family stayed at CLIC Villa. She said: “The staff have become lifelong friends and we visit whenever we can. I would like to name the house Ian’s House. He is one of my best friends and he was there for me through everything.”

Leona’s House

Cameron Jeffrey, eight, from Hawick, was diagnosed with cancer in May 2015. He was having difficulty walking, was sent for a scan and doctors said he had leukaemia.

Cameron’s mum Nicola Jeffrey said: “We had barely any time to come home and pack a bag to go to Edinburgh. We were just in a daze randomly throwing things in a bag – we didn’t know what we were doing.”

Cameron has autism, which made the medical procedures and environment hard to process.

Nicola said: “Mandy and the CLIC Sargent team got in touch and told us about CLIC Villa. I had no idea what a difference it would make for us.”

With CLIC Villa, one member of the family was able to stay at the hospital and another could be close to hand at the house. This really helped with the financial impact, which was adding more strain to the family.

Cameron hopes to be out of treatment by September 2018. Nicola said: “We would like to nominate the name Leona’s House after Leona Richardson, a cousin who was kind enough to make us fresh meals for when Cameron’s treatment was at its most intense. Leona was a great support to me when I needed time away from the hospital.”

Ciaran’s House

Reon McSherry, 13, from North Berwick, was a sporty and active boy, but his parents noticed that he had a number of small bruises on his ankles, which at first his parents thought were unimportant. However as he had an upcoming residential school trip, his mother decided that it would be worth speaking to a doctor before he went. Eventually he was diagnosed with leukaemia.

Mum Aileen McSherry said: “We had no clue what to do or how to react. It felt overwhelming. It was like the world was shrinking in on me and I was falling backwards, like the big bang was happening in reverse. Everything else disappears except that room and the news you’ve just been told. I didn’t sleep at all that night.”

“Mandy and CLIC Sargent were just there for us. We had no clue what we were all facing. She was so good. At that point we were broken and she knew just how to handle us.”

Reon eventually needed a bone marrow transplant – and his older brother Ciaran turned out to be a perfect match.

“Ciaran only told us about this later, but after his test, Ciaran got up in the middle of the night and went outside. He just walked out and looked out at the sea and wished that he would be a match. He never told me about that until afterward.”

The transplant took place but sadly, on the first anniversary of Reon’s transplant they found out that he had relapsed. He had immediate treatment in Edinburgh before going to Glasgow, and then London for a trial at UCLH. Reon had to have a second stem cell transplant, which saw Ciaran having five days of injections before the procedure to extract the cells.

“We would like to name the house Ciaran’s House for everything that he has done for Reon. Ciaran is just 16-years-old and he has sacrificed a lot. They have both been through this together for the last two years and will always have that special bond.”