'She was absolutely astonishing'

During Alexandra Johnston’s 16 years on this Earth, she touched hearts across the globe.

From the rural village of Claudy in Co Derry, Alexandra passed away on 18 January 2018 after a four-and-a half-year battle with Ewing sarcoma, a rare type of cancer that affects the bones or tissue around the bones and is most common in children and young people.

Now, Alexandra’s parents Andre and Karen, are continuing to share her incredible story and have opened a social enterprise café and charity, in her memory.

From day dot, Alexandra was destined for great things, and hearing about her sensational spirit and captivating courage, there is no doubt that Alexandra was an exceptional human being who lived life to the limit.

Breakage

Alexandra broke her leg in 2007 and 2008, and during the summer of 2013, before Alexandra started secondary school, Karen recalls her incessant leg pain. “She had pains down her leg and it got continually worse, so we took her to a private doctor. He said there was a chipped bone at the bottom of her leg and it was floating around hitting the nerves.

“He put her foot in a boot and told us to come back on 28 August; by that stage her back was getting sore and we thought it was because of the crutches.

“One day Mammy and Daddy were going to Belfast. Daddy was going for an appointment and he rang us saying, ‘I’m going to take Alexandra and see if they’ll look at her leg’.

“She was seen to by an adult orthopaedic and the minute he took off the boot, he knew something wasn’t right. Alexandra was sent for scan and he said to mam and dad: ‘I need to prepare you, for there is something really not right.’”

Diagnosis

On 14 August, Alexandra was diagnosed with Ewing sarcoma. Her condition was metastatic (the cancer had spread) and she was given three to six months to live.

“It came completely out of the blue. We were told to go home and have the best Christmas which we did, and then Alexandra lived for four-and-a-half years.

“The last count we did, she had about 110 chemotherapies, 50-60 radiotherapies, she had stem cell replacement treatment and I don’t know how many bloods and platelet transfusions,” says Andre.

“Throughout the journey she was absolutely astonishing. Her whole attitude, she was just like, ‘Do what you have to do, get on with it’. Alexandra never let life stop her.

“She had tests one Monday and Tuesday and we stayed in Belfast; the news we received wasn’t that great. Afterwards, I just wanted to get home. Alexandra came out from the nurse with two bits of numbing cream on her nose. She said, ‘Where are you going?’ I replied, ‘Home’, and she said, ‘No, you’re going down the town’. So Alexandra and I went down town to get her nose pierced. She put cream on both sides because she didn’t know what side she wanted it on.”

Helping others

Alexandra set up the Facebook page, Just Keep Swimming Yaya, to document her cancer journey. Yaya was her nickname and Andre reveals how she stole the hearts of people at home and abroad through the social media channel.

“Alexandra never said no. We’re still hearing about people that she helped through her life on Facebook. There was one girl, her sister had died in the Far East and she had been supporting her. We knew nothing until we met the father.

“We were over with Cancer Research and TK Maxx at Kensington Roof Gardens (London) for a party, she met stars, ones from Eastenders and then she met One Direction.

“She started watching Sons of Anarchy and by the time she passed away, she had watched the full thing eight or nine times. Ryan Hurst travelled from LA to Wales and we spent the weekend with him, Charlie Hunnam and the whole cast Facetimed her.”

Fighting spirit

Prior to Christmas 2017, Alexandra experienced a down turn, but her faith never wavered.

“We were told at the start of December that she might not see Christmas, her body was shutting down and again she bounced back. She asked me after Christmas, ‘Daddy, did you not think I would be here?’

“We never lied to Alexandra, so I said, ‘Your mammy and me are watching parts of your body breaking down, what are we to think?’ And she said, ‘Well I knew I would be’.”

Alexandra made her best friend take the crutches so if she saw anything in Topshop she could get out of the wheelchair

On New Year’s day 2018 Alexandra celebrated her 16th birthday but in the days to come, her form would deteriorate. On Thursday 18 January, Alexandra passed away.

“We were in Belfast for bloods and platelets and she asked the doctor if she could go down the town and he said yes.

“Alexandra made her best friend take the crutches so if she saw anything in Topshop she could get out of the wheelchair. That was the Saturday before she died,” says Karen.

“She bought a new pair of Doc Marten boots, and she had a £200 gift voucher for Topshop, she spent £80 in the shop and the rest online. The parcel arrived the morning she passed away.”

Andre and Karen gave Alexandra freedom to experience life and have no regrets in doing so.

We tried everything to save her

“Throughout the whole journey you had to get a balance right. She started to watch Sons of Anarchy and some people commented on how I let my daughter watch it at that age, there is no doubt that she got away with things.

“She had her first drink and her boyfriend, and we’re happy we saw that so we have no regrets and she had no regrets.

“We tried everything to save her and we’re very content that way but the loss, the loss of any child, it’s devastating,” Andre says.

“She was in hospital towards her last few days, a doctor came in to see her and he said, ‘All I see is a young, positive, brave, strong girl’.”

“That summed her up,” adds Karen.

Uniting communities

Alexandra was laid to rest in Claudy but her mass took place in Derry city. On the day of her funeral a unique occurrence took place.

“There was a police escort, roundabouts and shops were closed, people stood out, the last time they closed the Waterside was when Bill Clinton came to Derry,” remembers Karen.

“We’ve a friend of the family who is a Minster in Killrea, he did her funeral with Fr Chris (Ferguson).

We’re a mixed marriage and a wee girl of that age bringing communities together in Derry, a priest and a minster, it was amazing. That was all down to Alexandra.”

Yaya’s Shack

Yaya’s Shack opened in October 2018 in the Gasyard Centre, Derry; Karen explains how things fell into place.

“We were looking to open a coffee shop in Claudy. Alexandra’s best friend’s mammy rang and I told her I was looking at premises.

Linda is the manager here (in the Gasyard Centre), and she said, ‘I didn’t renew the contact on the coffee shop, so it’s open if you want it.’ Linda held a couple of things here for Alexandra and it just seemed right.”

Karen and Andre also established the charity, Just Keep Swimming Yaya, which has a particular focus on helping single parents whose children have cancer.

They hold fundraisers throughout the year such as bag packing and mentoring programmes; they also have plans to work with other charities.

“Three weeks before Alexandra died she said to her dad, ‘No matter what happens to me, I want a charity set up in my name to help fathers, mothers and kids with cancer’. That was her wish.

We had the launch of her charity on her anniversary, it was an amazing night.

“We set the coffee shop up as a social enterprise cafe so that they work in conjunction and profits go into Yaya’s Shack and Just Keep Swimming Yaya, it all works together,” explains Karen.

“This (Yaya’s Shack) gives us a hub to work out of. We had a group for six weeks on trauma counselling and it was great.”

Giving back

Andre and Karen want to keep sharing Alexandra’s story and to help others.

“We want to give back to people who gave comfort and advice through her journey,” says Karen. “To be there for people, to make them realise that they are not on their own and to spread awareness of Ewing sarcoma and help with research.”

I would like to write a wee memoir of what she did go through

In the future Andre would like to put pen to paper and really highlight just how little power cancer had over Alexandra’s character.

“I would like to write a wee memoir of what she did go through, to let people see that she went through all of that and she was still the way she was. Our experience and Alexandra’s experience over the years, it would be a sin to waste it.

“Everything we did wasn’t perfect, but when we’re chatting to parents we can say we’ve been there, even as far as husband and wife is concerned. So just to be able to sit down and talk to people, and to share experiences because it’s not a normal life.”

To find out more, visit Yaya’s Shack and Just Keep Swimming Yaya on Facebook.