Childhood cancer is a devastating illness that throws families into a whirlwind of unimaginable turmoil and despair. Danielle Johnson spoke to Joanna Morris about the life-changing impact of her young daughter’s serious illness

TWO-YEAR-OLD Rosa Johnson’s prized possession is a long and colourful string of beads with a unique meaning.

Each bead represents one step in her battle against life-threatening childhood cancer, one bead for a blood transfusion, another for hair-loss, another for chemotherapy – the beads could wrap around the tiny child twice.

For the happy and talkative toddler, they are as much a part of her life as a gruelling merry-go-round of hospitals and medical procedures.

For her parents, the Beads of Courage – given to youngsters battling childhood cancer – are a heart-rending symbol of little Rosa’s struggle to overcome acute lymphoblastic leukaemia.

Symptoms of Rosa’s disease were missed by medics on several occasions, despite Colin and Danielle Johnson becoming increasingly worried after Rosa fell ill with a fever in October 2015.

“We were sent home with antibiotics from the walk-in centre and told she had an ear infection. She then developed an intermittent limp, her balance went but the doctor said she was fine – it felt like nobody believed me and I had a horrible premonition that something horrendous was going to happen,” said Mrs Johnson.

By November, Rosa had been rushed into hospital, where an eventual diagnosis plunged her and her family into a life they could never have prepared for.

The Johnsons, from County Durham, are now balancing the care of Rosa and her sister Jasmine, five, with a campaign to raise awareness of childhood cancer and the impact it has on families.

“When we had a diagnosis, our world fell away – we thought we would lose her and were suddenly plunged into a different world.

“Newcastle’s Royal Victoria Infirmary became our second home and the only ones who really understood the devastation were the other families there.

“Some families we’ve met have children who have suffered for a long time, with long-term side effects. We’re like a big family and we stick together, if a child is hurting, we’re all hurting.”

The families at the RVI support each other as their children undergo repeated rounds of treatment, some of which can have a significant impact on the character and well-being of the child.

“I have found a new, different love and a different type of patience for my children,” says Mrs Johnson. “Rosa’s medication can affect her mood and we have become her carers, we’ve had to become experts and it’s difficult. The world we’re living in is full of turmoil, confusion, worry, pressure and the desire to grab valuable moments as a family to get through it.”

Rosa’s parents also struggle with the knowledge that they no longer have control over their own daughter.

“We have to get approval from Rosa’s consultant as to what she can do and who she can be with.

“Babysitters are out of the question unless they’ve been trained by the hospital in how to manage Rosa’s condition.

“We can’t plan anything – life changes in that way and one of the hardest things has been no longer having control over our daughter.

“We can’t give her Calpol without permission from the hospital and if she grazes her knee, we’d have to call them and find out what to do.”

Many families of children with cancer are battling financial uncertainty – a side-effect of the disease that is little known, says Mrs Johnson.

“It’s vital that parents get to spend time with their ill children, it’s more vital than money but the situation is so difficult.

“One single mother I know was forced to go back to work not long after her son’s diagnosis and I can’t imagine how hard that must have been. Rosa’s situation could change overnight and I’d never forgive myself if I went back to work and lost precious time with her.”

The Johnsons are urging families to access the support available, and suggest contacting charity CLIC Sargent for financial help and non-medical assistance.

They are also encouraging the public to take out critical illness insurance – with cover for children – to guard against any financial implications.

Most importantly for them, they are begging parents to act on their gut instinct and insist on medical testing if they’re worried about their children. They claim many diagnoses are delayed by medics missing symptoms and believe this is a common problem, rooted in a lack of awareness.

The Johnsons are calling for better training for GPs, who may only ever see two cases of childhood cancer in their career.

Mrs Johnson said: “You see posters everywhere about adult cancer but there’s nothing about children. This condition is rare but we know of many misdiagnoses – cancer symptoms written off as growing pains, for example, with lots of parents being told they’re just being overprotective.

“Our message to parents is to go with their gut instinct and don’t be afraid to demand tests. Because childhood cancer is so rare, some GPs see tests as a last option, rather than a first – we need that to change.”