“The doctor called me while I was on my bike ride. She said that Ayla’s white blood cells were low, and I just knew. I had a breakdown on the side of the road and I said to her – ‘It’s cancer, isn’t it?”
“She said, ‘well, we don’t know, and I can’t confirm that but it sounds likely based on her symptoms and her blood results’”
Yvonne was talking to her doctor about her 6-year-old daughter, Ayla. The school holidays had just ended, and Ayla had been dealing with fatigue and a persistent cough. It seemed like a mild cold and nothing to worry about.
“But we started thinking, when she didn’t seem well enough to go to school, and even that day, tossing up whether to send her or not…”
Yvonne takes a deep breath, holding back tears. “We thought – OK, she’s not well enough to go to school. Maybe the fatigue isn’t linked to the cold.”
Yvonne and her partner Nathan took Ayla to their GP, who noticed small bruises on her body. She checked her lymph nodes, then her liver, and immediately got on the phone with the hospital to discuss the symptoms. Blood samples were sent off urgently.
This is when their whole lives changed. Ayla was diagnosed with acute lymphoblastic leukaemia (ALL). Then, ten days later, Yvonne’s father lost his battle with pancreatic cancer.
“I’m really upset that he had to find out about Ayla’s diagnosis before he died. And he didn’t get to see the good outcome on the other end, which we are well on our way towards now.”
“I’ve accepted it – mostly – day to day, but there are still moments where I think, is this real? Sometimes I think: I can’t believe I have a child with cancer…I can’t believe Ayla has cancer.”
Whereas for Ayla, she processed the diagnosis differently. “She deals with things quietly, but then goes away to think. And she comes back with the most amazing things that make you say – yup, you get it.”
For example, Ayla immediately bonds with people who have nasogastric tubes (feeding tubes), even if they don’t have cancer. She knows some sign language, which was useful at one point when her body shut down, and she almost stopped talking completely. Her signing was a useful tool to communicate with her parents.
Communication was important, and Yvonne is grateful of LBC’s Super Kids’ Club for facilitating connections for Ayla. “It’s so helpful for Ayla to have contact with other children with leukaemia.”
“In the first Super Kids’ Club session, she opened up much more than usual. She asked the other kids whether they also had hair loss, and whether they had nasogastric tubes too…things that took her a long time to come to terms with for herself.”
LBC gave the family a picture book called Joe Has Leukaemia, which was immediately helpful for Ayla’s brother Mikah. Whilst it took some time for Ayla to engage with it, it helped her do something incredible when she finally did.
“She wrote her own book called Ayla Has Leukaemia. And when she went back to school, she read it to her class to explain to them what was going on.”
Yvonne could also write a book of everything she has learnt. But her advice for other parents is simple. “Trust that you will learn how to navigate all these things. Know that you’re enough for your child. You might not be perfect, but all they need is for you to be there. All the other stuff? You’ll learn.”
As Yvonne says this, she pauses and attends to Ayla, who is playing with a toy. It’s a profound moment which shows that despite having ALL, Ayla is not just a patient but she is a normal seven-year-old girl, who wants to be a kid. And Yvonne is more than a nurse or a carer for Ayla, but she is a mum doing her best. This is not something that Ayla’s cancer could ever take away from their family.
“It’s been such a big lesson in learning to say to myself: What’s happening right now? When I get carried away. I think – ok, well she’s actually having a really good day. Things are really good at the moment.”
“So, focus on that and enjoy what we’re doing right now.”