Irish mum on the moment she was told her child had cancer: 'She had chicken pox and now she had cancer... I couldn't believe it'
Published 02/09/2015 | 10:55
Little Ellie Louise Brown couldn't wait to get back to school yesterday and it was with a huge smile on her face that she skipped into her new class radiating happiness and good health.
The six-year-old from Tyrone, who is described by her mum Fiona as "a real wee character", has had much of her short life so far overshadowed by the trauma of cancer.
Her battle has been a tough one, but seeing her yesterday dressed in her new school uniform eager to get out the door to catch up with her friends again is a moment - like all moments now - which Fiona will always cherish.
"Cancer is very unforgiving and you learn to live in the moment and appreciate absolutely everything you have got," says Fiona.
Not only does she appreciate that Ellie Louise is now well and back at school, but Fiona carries heartfelt gratitude towards local charity the Northern Ireland Cancer Fund for Children who supported the family through the long ordeal two years when her daughter fought for her life.
Today, she shares their story in the hope of highlighting the good work of the charity, which will play a key role in Childhood Cancer Awareness Month, which started yesterday. Fiona (45), a nurse, is married to Rodney, (46) a self-employed mechanic, and as well as little Ellie Louise they have a 19-year-old son, Ryan.
Life changed unexpectedly and in the most frightening way for the family back in March 2012, when little Ellie Louise was diagnosed with acute lymphoblastic leukaemia, when she was just three years and three months old.
Ellie Louise had chicken pox and her mum was worried about a high temperature when she took her to hospital - never for a second suspecting that she would be told her daughter had cancer.
She says it is a moment she will never forget: "For about 10 days before going to hospital, she had chicken pox and a very high temperature. Nothing was bringing her temperature down and as a nurse I was concerned about it and worried that she might have another infection.
"I was back and forward to the doctor and then one morning her temperature was very, very high and I took her to our GP who carried out some blood tests.
"The next morning, she was as white as a sheet and her temperature was still sky high, so I took her straight to casualty at Craigavon Hospital.
"The blood results from the day before had come through in the meantime, and showed that her platelets were low. She was admitted to Craigavon Hospital that night and at 1am the next morning a doctor came to speak to us, and told us she had leukaemia
"It is just shocking," she says. "I couldn't believe the words I was hearing or the situation we were in. A few days ago she had chicken pox and now she had cancer. I just couldn't believe it."
Little Ellie Louise was very ill and had developed a number of infections. Her heart rate was also low and she was transferred to the Royal Victoria Hospital for Sick Children.
Doctors worked to get her bloods up, so that she would be able to go to theatre for a biopsy to determine what kind of leukaemia she had, so that treatment could begin urgently.
After her first dose of chemo she started to take seizures and her mum feared the worst as medical staff worked for two hours to save her life.
Fiona says: "Those first few weeks were very frightening, but she was such a resilient wee child. Her cancer was high risk so she had to have really gruelling chemotherapy.
"She had a number of different chemos and it was very intensive for the first nine months. She needed a further 18 months of treatment after that. Her treatment finished on July 23 last year, and she had suffered from a series of infections post-treatment. It was such a hard journey and it is such a hard thing to hear your child is not well and to be told she has cancer. It is something I will never forget as long as I live."
During Ellie Louise's treatment the family felt isolated as they were unable to go out due to the risk of infection.
It was during those tough two years that the Cancer Fund for Children made such a difference to all their lives.
Ellie Louise and her brother Ryan both benefited from visits by support workers from the charity, as did Fiona, who found it easier to talk openly about her worries to them.
Ellie Louise also attended Cancer Fund for Children organised events which introduced her to children in a similar situation.
The family also enjoyed breaks away together to Daisy Lodge. The charity's free short therapeutic break facility in the foothills of the Mourne Mountains was a welcome reprieve during a time when they were largely confined to home due to Ellie Louise's treatment.
Fiona adds: "The Cancer Fund for Children was an absolutely brilliant support for us. The therapeutic breaks were life-saving as we couldn't go out for fear of infection and couldn't go on holiday at the time.
"Just to get away and have a rest was brilliant. Also the support for Ryan was fantastic as he was doing his GCSEs at the time. As a teenager, he had a lot going on in his life while his sister was going through treatment.
"I attended a mum's weekend run by the charity. And just getting a chance to meet other mums who were going through the same thing and who understood was a great help.
"The charity does so much to help families and, even after treatment is finished, they are there for you.
"There are so many rare childhood cancers and awareness is so important. There needs to be research into these cancers to find treatments. When you are on that journey you meet so many families going through difficult times, and it is heartbreaking what some of them have to endure.
"It is a whole new world, and a world you don't want anyone to have to experience.
"For those families who lost their children, words fail me - to explain what that feels like. I feel so blessed that Ellie Louise is still here with us."
During Childhood Cancer Awareness Month, Cancer Fund for Children will be campaigning to support even more families just like the Browns whose lives have been devastated by cancer.
Every week in Northern Ireland, another three children, teenagers or young adults will be diagnosed. The charity's ambition is that no family should face cancer alone.
While little Ellie Louise is now recovered and happily back at school, her future is by no means certain and it means everything to her mum that she has the reassurance of knowing the charity is there for her.
She adds: "You don't go through this journey and not be changed forever. Life will never be like it was before, and we will never have that carefree element we had.
"I feel fearful all the time. Ellie Louise will continue to have check-ups until she is 18 - not just to make sure the cancer hasn't come back, but also to see if there are any long-term effects from the toxicity of the treatments. Every check-up and every symptom, you are nervous and apprehensive.
"I will always be fearful that it could happen again. Knowing the charity is there to support us means such a lot."