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A year ago, Alexandra Johnston (12), from Londonderry, was given just months to live. Now, she’s back at school. Mum Karen tells Stephanie Bell her favourite band and the power of prayer saved her life.
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Londonderry girl Alexandra Johnston is a walking miracle. This time last year the 12-year-old’s little body was so riddled with cancer that she was given between just three and six months to live.
The cancer was so widespread and advanced that even the consultant struggled with his emotions as he broke the news to Alexandra’s stunned parents that there was no hope for their adored little girl.
But after a punishing year undergoing the most intensive treatment, Alexandra has defied all odds to beat the cancer and join her friends at the start of term at St Celia’s School in the Creggan.
Her mum believes that her miraculous recovery is down to the power of prayer – aided also by her devotion to One Direction whom she managed to see three times when she was ill, even getting to meet them through the Make a Wish Foundation.
A life-size cut-out of her favourite band member, Niall Horan, was her constant companion in hospital during a tough year during which she went through seven courses of chemo, stem cell treatment, radiotherapy and 28 days in isolation.
Her overjoyed mum Karen says: “She really is a wee inspiration. She is doing wonderfully considering what she has been through and the fact that we were told we would lose her. I believe in prayer and I believe she was saved by the man above. She had her big scan at the end of July and the results showed she is in remission. She will never be completely clear but, after what we were told last year, it is a miracle.”
Alexandra was diagnosed with Grade 4 Ewing Sarcoma – a rare disease in which cancer cells are found in the bones or soft tissue. A scan showed a tumour the full length of her leg, a tumour 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.
Her mum believes the first signs began to appear as early as 2007 but the cancer was only picked up last August when she went for a private consultation for an ongoing pain in her ankle.
Karen (48) and husband Andre (47) had no choice but to give up their jobs as chefs so that Karen could be with Alexandra during treatment in Belfast.
Andre, meanwhile, cared for their two youngest children Callum (11) and Ryan (9) back home in Derry. They also have two grown-up girls, Danica (24) and Carly (23).
Karen recalls what they now believe was the start of their youngest daughter’s tough cancer battle six years before she was diagnosed.
"She broke her ankle on a trampoline in 2007 and then two more times in the next year, one by putting her foot in a pothole and the third time on a set of steps in school," she says.
"She had a lot of physio to rebuild the muscles in her leg. Everything seemed ok until the last month of school last year when she started to complain about pain in her ankle again."
Alexandra was brought to hospital in Coleraine where she was diagnosed with a floating bone in her leg which was causing infection.
However, over the next few days her leg began to swell and a concerned Karen brought her to her GP who sent her back to hospital suspecting a clot.
The hospital gave her an injection as a precaution against a clot and arranged for her to come back the next day for an ultrasound scan of her leg.
That was in June 2013 and Karen says: “Despite doing a full scan they didn’t pick up the tumour which has just left us dumbfounded.
"We were basically told that it was a floating bone and it would settle and go home and not to worry."
But they did have cause for concern as Alexandra was still in a lot of pain.
Unsure what to do, Karen and Andre decided to book a private consultation. An MRI scan was taken of Alexandra’s ankle and again they were told she had a floating bone in her ankle.
It was recommended that their daughter wear an air boot but the pain persisted and within just a couple of days had moved to Alexandra’s back.
Karen says: “My daddy, who had a heart attack a couple of years ago, was going for a consultation to the Ulster Independent Clinic and asked if he could take Alexandra with him.
"When we got there we asked if there would be anyone available to see her.
"They had a bone specialist who took one look at her leg and did an MRI scan which showed up a tumour the full length of her leg, wrapped around her tibia, fibia and her ankle."
A couple of days later in Musgrave Medical Centre, a full body scan revealed the extent to which cancer had spread through the child’s body.
"When the consultant came with the results to tell us he started to cry," Karen recalls. "The child’s body was absolutely riddled with cancer.
"He told us she had between three and six months left. You couldn’t describe what that feels like.
"We were told they would do all they could for her and chemo would start straight away.
"It was like our world had ended.
"There is a gap of 12 years between Alexandra and her older sisters and when she came along after all that time she just became our world. She was so spoiled and idolised and to get that news is just horrendous.
"Your world is turned upside down."
After two sessions of intensive chemotherapy there was astonishment and relief all around when scans showed that Alexandra’s tumours had responded well by shrinking.
She underwent a total of seven courses, then faced 28 lonely days in isolation for stem cell treatment to be carried out.
This was followed by a seven week course of radiotherapy in Belfast, which she underwent five days a week. Since then Alexandra has gone from strength to strength and after missing most of first year at her new secondary school, she was delighted to be able to join her friends at the start of the new term this month. It has been a long struggle but the family are now looking to the future.
The whole family is supporting the Northern Ireland Cancer Fund for Children in its campaign for Child Cancer Awareness Month, which runs throughout September.
They feel indebted to the charity for its support during Alexandra’s treatment, especially during the lonely days in isolation.
Karen says: “Initially whenever we were diagnosed, we were hit by a ton of bricks and life changed overnight, really.
"We both had to give up work, as I was practically living in Belfast, so it affects everybody.
"When she was going through chemotherapy and her stem cell transplant, Alexandra was kept in isolation for weeks to avoid picking up an infection.
"When you’re on that isolation unit, they’re not allowed out of the room at all, not even to go to the loo. It was an extremely lonely and hard time.
"One of the charity’s specialists came out to visit her twice a week in the ward which helped a lot. It allowed her to socialise with someone else as she was only having contact with her dad and I.
"It gave her the chance to discuss any worries or fears and really gave her a boost.
"The specialist also came out to our house to work with her when she got out of hospital.
"Also, before we actually went to high dose chemo, we were taken on a family break – a wee trip down to Newcastle where they have Daisy Lodge, a fantastic facility for the youngsters and their families. They have activities and loads of stuff, just to bring back a wee bit of normality and the siblings get to go as well."
To help brighten life for Alexandra during the tough months of treatment her family arranged for her to see her idols One Direction twice at Croke Park in Dublin. She also travelled to Wembley Stadium in London where she managed to meet the band through the Make a Wish Foundation.
Alexandra says: “They were just lovely young fellas and I was wearing Niall’s jacket which he had thrown into the crowd at a concert and which the girl who caught it sold and I bought. He recognised it and it was just amazing to meet them.”
Of her battle with cancer, she says: “It wasn’t easy but I think I just stayed strong for myself and kept myself up for my parents and my family.
"It’s been difficult but I’m glad to get back to school and see my friends."
Her mum adds: “What that poor child has been through and to come out the other end is just amazing. She has such spirit and One Direction really helped. She had a life-size cardboard cut-out of Niall in hospital with her all the time and it used to give the nurses quite a fright at night but I think it helped keep her going.
"Seeing them was very special for her, thanks to the Make a Wish Foundation. She was still in a wheelchair and had lost her hair and the band all gave her hugs and kisses which meant the world to her. Thankfully we have all come out the other end smiling.
"Andre’s back working part-time as a consultant and we are getting back some normality. We are just grateful for the miracle that has saved our wee girl."
Karen made a heartfelt plea to people to support the Cancer Fund for Children, emphasising how crucial the work they do is for families when their lives are turned upside down by a child cancer diagnosis.
Every week in Northern Ireland three new families are facing the same horror.
"At the beginning of treatment, everything stops," she says.
"Parents can’t work and the Cancer Fund for Children is always there financially as well to help out. They’ve been fantastic. We couldn’t do without them.
"We never thought we were going to be put in this position but you don’t know what’s around the corner.
"Literally five minutes can change your life and without those charities out there, we would be lost, and without people donating, those charities wouldn’t exist.
"We’ve met children affected by cancer from four weeks old. They need something to make life that wee bit normal for them.
"When they can’t go out and do the daily things that all normal teenagers or youngsters do, they need something to bring them that wee bit of normality when they’re going through the trauma of cancer."
Golden chance to show support
Every week in Northern Ireland three children, teenagers or young adults, aged up to 24, are diagnosed with cancer
The NI Cancer Fund for Children is the leading local cancer charity providing practical, financial and therapeutic support to children, young people and teenagers living with cancer and their families
The charity works with around 350 families at any one time
In 2012/2013 it delivered 198 specialist one-to-one sessions, 195 therapeutic short breaks and 28 residential weekends
Treatment generally lasts two to three years. It can be aggressive and in some cases can cause lifelong health issues
You can support Childhood Cancer Awareness Month by wearing a gold ribbon which can be purchased from Sainsbury’s Forestside branch, Ulster Bank, Progressive Building Society, A McLean Bookmakers and Mount Charles canteens. You can also show your support and donate £3 by texting DAISY to 70555
If you are affected by childhood cancer and need help or advise you can contact Cancer Fund for Children on, tel: 028 9080 5599