Lucy’s story

It had been a busy year but by November 2016 Lucy, who was in Grade 2 at the time, was becoming increasingly tired after school and on weekends – preferring indoor play.

Lucy was attending school and extra-curricular activities but complained of intermittent mild headaches, decreased appetite, then started to come out in unexplained bruises, was pale and had spiking temperatures.

Lucy’s mum Julie took her daughter to their local doctor in northern New South Wales on the Monday morning. “We were referred to the paediatrician, who was on call for the local hospital and admitted to the children’s ward for investigations,” Julie recalled.

Two days after visiting the local doctor, Lucy and her mum were being flown to Lady Cilento Children’s Hospial – 500km away.

“Lucy had six months of high-risk chemotherapy before undergoing a haploidentical stem cell transplant on 27 June 2017,” Julie recalled. “Thankfully there has been no evidence of disease post-transplant, but her path post-transplant has been bumpy and she has a few issues that still require management at Queensland Children’s Hospital.

Lucy spent time as both an inpatient and outpatient but had to stay close to the hospital in Brisbane. She did not return home until 26 April 2018 – some 18 months from her original diagnosis.

“Being able to rejoin her classmates in Year 4, at the start of Term 2, was a huge milestone for Lucy and a joyful day,” Julie said. “She had been regularly taking trips to Brisbane during Term 2 but a new problem has developed, which meant we had to move back to Brisbane to be closer to the hospital. We are hopeful that she will return home before the end of Term 3.”

Julie explained the feeling of being told your only child has a life-threatening illness.

Mixed with sadness and fear is also a sense of gratitude for the care Lucy has received and the support of family, friends and strangers.

“However, we are also grateful to be receiving care at Queensland Children’s Hospital, grateful that Lucy was diagnosed with acute lymphoblastic leukaemia, which has better outcomes than other childhood cancers, and grateful of the support we have received.

“It was heartbreaking explaining to a homesick seven-year-old that she had leukaemia and that we would need to stay in Brisbane and let Captain Chemo kill the nasty blast cells before we could go home.

“Lucy has been amazing, she cooperated with everything that was asked of her and 20 months on, she is still rolling with it and doing what needs to be done.

“We were fortunate that we could be together for the few months in Brisbane.  The Armidale School, where Lucy’s dad is a teacher and where Lucy attends as a student, has been very supportive.  Michael was initially given the remainder of the term off when Lucy was diagnosed and also time off for a transplant. He eventually had to return home for work at the beginning of 2017 while Lucy and I remained in Brisbane for treatment, but he would visit every other weekend.”

Over the past 20 months Lucy has accessed a range of programs funded by the Children’s Hospital Foundation. She particularly enjoys music therapy, bedside play and the Family Resource Centre.

“She loved getting her picture with the reindeers at Christmas, the delivery of eggs and a bunny at Easter and attending Gallery of Modern Art thanks to the Children’s Hospital Foundation,” Julie said.

“Lucy loves family holidays and adventures, spending time with her cousins Tilly and Holly and friends, all things Pokemon, art, craft and pottery, movies, the theatre, reading, school and having fun.”

Lucy is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Lucy’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.