Edinburgh schoolgirl diagnosed with rare cancer which doctors said was 'growing pains'

Her doctor said the cause of her discomfort could be growing pains, but added that her symptoms could also be the result of a viral infection. Ava returned to school after the weekend but again was sent home due to the pain.

The nine-year-old was taken back to see a doctor, who said the youngster could have a form of ‘reactive arthritis’ following a bout of flu.

But results of a blood test taken at Edinburgh’s Sick Kids - which initially saw Ava sent home with painkillers - alerted a haematologist to a much more serious condition.

Samantha, 39, said: “The first time I took her they said it was just growing pains, but it was in one knee, not two. But I said I didn’t remember it being how it worked when I had them.

“You rely on professionals to look at the big picture. We were told we’d have to come back in two weeks to repeat the blood work, but we were getting really worried.

“We were giving her ibuprofen, we were giving her Calpol, we were having to massage her leg. We were doing heat packs every hour or two hours.

“One of us had to sleep next to her because she was in so much pain. She’d wake up crying. It got to the point where it was travelling down her leg, the pain relief wasn’t even touching it.”

Weeks after Ava had first complained of knee pain, her parents’ worlds came crashing down when doctors told them Ava had acute lymphoblastic leukaemia, a rare blood cancer which affects the bone marrow.

Stay-at-home mum Samantha and web designer dad Jamie were then tasked with the unthinkable - having to break the news to their nine-year-old daughter.

Samantha said: “It’s the worst moment I could imagine as a parent or a person, having to hear that. We were absolutely devastated, my husband and I just fell apart.

“It was Friday, so we had to make the decision as to whether we told her or whether we gave ourselves the weekend to process it ourselves.

“Ava is incredibly bright, she knew when we came back into the room. We burst into tears and told her.”

Ava quickly started chemotherapy and was kept in hospital for three weeks in December, having only managed to get home on Christmas Eve. And since January 13, Ava has been back in hospital due to a fungal infection.

The youngster is now facing more than two years of treatment, which at the moment sees her receive a lumbar puncture, or spinal tap, once a week to administer the chemo into her spine.

With their extended families located thousands of miles away in New Zealand and Australia, Samantha and Jamie, 38, who have been in the UK for 12 years, now juggle caring for Ava and her two-year-old sister Zoë.

But family friend Laura Gillespie has offered her support and has set up a GoFundMe page to support the family and give Japan-obsessed Ava something to look forward to – a trip to visit Tokyo’s Capybara Cafe.

Samantha said: “The plan is to get some travel brochures and to go through what she wants to do, and come up with an ideal itinerary for her. It will give her focus, but it’s going to be years before we can go.

“She’s got two years of treatment, then six months after she’s completed her treatment and been all cleared, she has to go through her immunisations again as if she’s a baby. That’s going to take six months again before we even leave – we don’t want any bugs creeping through her immunity, it’s so compromised at the moment.

“We are looking at a three year journey, but it means three years for her to have the dream trip.”

Samantha also thanked those who have supported Ava and their family over the past few months during the most difficult times.

“I’d like credit to go to the nurses and the doctors on the ward. We’ve had such great support, and the LoveOliver charity has been really kind, as all the charities have been.

“If it wasn’t for my friends’ support I have here, it would be even worse. It’s hard balancing the caring needs of one child and the caring needs of a toddler, who doesn’t comprehend what’s going on and just wants her sister and her parents home.

“We are very lucky in that sense, that we have the support.”

She also urged other parents to follow their intuition and advocate for their children when they know something is wrong.

She said: “Parents just need to trust their instincts when it comes to their children: people don’t know them outside of your home. If you think something’s wrong it’s really important to push and get it checked properly.”

You can donate to the GoFundMe here: https://www.gofundme.com/f/avas-capybara-cafe-tokyo-dream