To mark September’s Childhood Cancer Awareness Month, we’re sharing the inspiring stories of little warriors like Daisy, who was diagnosed with an aggressive blood cancer at just four months old.
No parent ever wants to hear the words: ‘your child has leukaemia’ but imagine hearing them within weeks of welcoming your child into the world.
That was the devastating reality for the Neve family, who were rocked by baby daughter Daisy’s leukaemia diagnosis in early 2019.
“We had no idea when we took her to emergency that she was so sick, “ Daisy’s mum, Jacinta, said.
“We thought she had a virus because her only symptoms were lack of appetite, some small bruises on her legs and a bloated abdomen, which had only appeared the day before.”
Living in the eastern suburbs of Perth, a 45-minute drive to the hospital, the family were forced to leave their home for Daisy’s intensive treatment.
“Because Daisy was under one, her treatment is very different to the older kids,” Jacinta said.
“She had to stay as an inpatient for the duration of her intense rounds of chemotherapy – a total of four rounds and 240 days, all spent in hospital!”
During her treatment Daisy experienced many setbacks.
“She got extremely sick with pneumonia, a fungal lung infection, sepsis and cellulitis, all at the same time,” Jacinta explained.
“We have since found out that her body metabolises the oral chemo differently, so we have had to give her another drug to make sure it’s doing its job properly.”
At the time of her diagnosis, Daisy was much too young to understand blood cancer and the reasons for her intensive treatment.
However, Jacinta and her husband, Matt, made sure to sit down with Daisy’s older brother, Jack, who was two and a half at the time, to explain what was happening.
“We explained Daisy’s blood was sick, that she had some bad cells and the medicine the doctors gave her was killing them,” Jacinta said.
“We read books with him that helped explain cancer and how Daisy would lose her hair.
“We also tried to remain positive and didn’t let him see her when she was at her sickest.”
Daisy and Jacinta were away from their home for a total of nine months.
“We missed out on many special occasions and the mum-guilt gets me every time, spending so much time away from my husband and son,” said Jacinta.
“We were overwhelmed by the incredible support we received from everyone but being away from home for so long was definitely the hardest part.
“Speaking to people from the Leukaemia Foundation on the phone and receiving their support has been great. Having someone to chat to and share our story has been really helpful.”
After her intensive treatment, Daisy underwent several months of maintenance treatment at home.
“Maintenance for Daisy was oral chemo at home every night and a monthly review to adjust her doses as she needed,” Jacinta explained.
“She also received weekly immunoglobulin infusions, which I gave to her at home through an injection in her leg, until her immune system rebuilt.”
Jacinta and her family call Daisy ‘our warrior’, drawing motivation and hope from the way she has undergone treatment without complaint.
“She willingly has blood tests without shedding a tear, even picking out which finger nurses can prick,” said Jacinta
“She wouldn’t make a sound when having dressing changes.
“I’m also constantly inspired by all the other families on the ward who have gone on this journey with us.
“Some have lost their beautiful children and some are still fighting, but we are a one big family, all connected by our experience.”
To honour their blood cancer journey and others going through the same, the family took part in the Leukaemia Foundation’s Light the Night event for the first time in 2020.
“It meant everything to us to participate. We have seen first-hand how blood cancer has affected our family and so many others,” Jacinta said.
“Raising more awareness not only for blood cancer but for childhood cancer is the most important thing to us. Awareness equals funding, which equals a cure.”
After two years and two months of treatment, Daisy finally got to ‘ring the bell’ to mark her end of treatment in March 2021!
Jacinta’s advice to other parents
- Ask your doctors questions, don’t feel silly and ask them to repeat the answers a hundred times if you need them too.
- Take photos and write a journal, it helped so much to have all Daisy’s blood counts written down and what she has done each day, as well as a little note to her about how she was doing.
- Reach out for help, from meals, to washing and cleaning, visitors and even financial help accepting help made our journey that little bit easier.
