Derry schoolgirl Alexandra Johnston is known as “the beacon” at the Royal Victoria Hospital in Belfast where she’s receiving treatment for Ewing Sarcoma – a rare disease in which cancer cells are found in the bones or soft tissue.
Life was turned upside down for Alexandra and her parents last August, when after a series of problems with her ankle, the Derry girl – who was then 11 – was diagnosed as having a tumour the full size of her leg.
By then, cancer was also affecting her spine, the back of her skull and her lungs.
“I can’t even begin to describe what we felt when we heard that news,” Alexandra’s mother Karen told the Journal this week.
“We knew the outlook was not good, but that moment, when you hear it, you just can’t take it in.”
Karen and her husband Andre had struggled for weeks for a diagnosis for her daughter.
They had looked on frustrated, as a series of GP visits over her increasingly swollen ankle led nowhere.
Despite the fact that Alexandra’s white blood cell count was low, it was only when she accompanied her grandfather on an appointment he had a private clinic in Belfast, that the severity of the problem was identified.
“After so many weeks of not knowing what was going on, we knew that Alexandra wasn’t getting any better.
“We knew it couldn’t be as simple as an infection. We were being given antibiotics, but they weren’t working for Alexandra.
“That day, when my father was going for his appointment, he took her with him and the consultant he was seeing knew straight away that something was wrong.
“He ordered an MRI of Alexandra’s ankle and that’s when the tumour was discovered.
“That day, when my dad rang me, he asked me if I’d go down to Coleraine, where my parents live, to get Alexandra. When he told me what they’d discovered, I threw the phone down. When I heard the word tumour, I just couldn’t take it in.”
Almost immediately after her MRI, Alexandra was sent for a CT scan and was admitted to Musgrave Park hospital.
At that point, she was experiencing paralysis in her face.
“Initially, we thought this was because of the stress and pain she was going through or maybe that it was Bell’s Palsy, but then they discovered that Alexandra also had a tumour at the back of her skull,” says Karen.
“When they told us that it was Ewing Sarcoma, and what the prognosis was, we were so frightened for her.
“The only positive was that our consultant, Dr. Robert Johnston, was amazing.
“He has just been a godsend throughout it all, and he’s really been amazing.”
Alexandra underwent invasive treatment, but has come through everything with a smile on her face and has, as her mother says, been “beyond brave.”
“She’s just been amazing. When she was going through chemotherapy and a stem cell transplant, she was kept in isolation for weeks, but she just kept going.”
Alexandra was also admitted to intensive care after attempts to put a line in for stem cell treatment failed.
When a similar procedure was carried out on the 11-year-old’s neck, because of the complexity of her illness, it caused her lungs to collapse.
Despite all of this, Alexandra has come through everything with a smile on her face, and continues to inspire everyone around her.
“She’s always more worried about the other children in the ward around her.
“Last week, she insisted on going to the wake of a little boy she knew who had died. She just cares so much about everyone else.
“When the staff see her coming they call her ‘the beacon’.
“She’s just a shining light for everyone around her.
“Nothing gets Alexandra down. She doesn’t even mind about losing her hair and says she’s proud to be bald. She is fantastic and we’re so very proud of her.”
Karen and her family are now throwing their weight behing the Northern Ireland Cancer Fund for Children’s Zipline Challenge.
Karen says the charity has been a lifeline to Alexandra and the entire Johnston family over the past number of months.
“When she was going through chemotherapy and her stem cell transplant Alexandra was kept in isolation for weeks to avoid picking up an infection.
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.
“We also got the chance to take a free therapeutic short break which allowed us to all be together as a family and relax for the first time in ages.
“We really needed that time away.
“I’d encourage anyone to raise funds for this amazing charity so more families can benefit from the vital support that we were given.”
Meanwhile, brave Alexandra is continuing to inspire her family and those around her every day.
“She just keeps going, and that’s what keeps us going,” says Karen.
The Lagan Zipline Challenge takes place over June 7 and 8. To sign up, telephone 02890 805599, email firstname.lastname@example.org or visit www.nicfc.com/events