In 2008, Sandra Evans was told the crushing news that would be every mother’s worst nightmare. Her four-year-old child had blood cancer.

“I remember coming into the daycare center and looking at her,” Sandra recalls. “She was sitting on the grass slumped over, looking tired. She was probably a little bit moodier, a little bit kind of emotional.”

But being four-years-old, Sandra didn’t deem Tahlia’s situation serious. But nothing would have prepared her for what happened next.

After developing a lump in her eye, Sandra took Tahlia to a GP, who referred them immediately to a doctor at the Royal Children’s Hospital in Brisbane. Tahlia underwent eye surgery, as Doctors thought that they had identified a tumour underneath her eye.

It was then that Sandra received the phone call that would change her and her family’s lives forever.

“We got a phone call from the Royal Children’s Hospital several days afterwards, [they said that] somebody looked at her blood and realised that it wasn’t a tumour. It was actually a pooling of leukaemia cells underneath her eye.”

“The diagnosis was devastating. In the first few days everything is so surreal; you are very vulnerable and fearful.”

Just like that, Tahlia’s blood cancer journey began, and Sandra had to find a way to explain to her four-year-old daughter that she had blood cancer.

“Looking back, I don’t remember how we explained that to her,” Sandra said. However, what Sandra does remember is that she had to be strong for her daughter, and together with her husband, keep the family united in strength and determination.

“With childhood, there’s that great kind of parental protection kind of mode that you go into where you know how disastrous this situation is, but how important it is that you have a sense of calm. So that that horrible kind of terror is not passed onto your child.”

Luckily, Sandra’s parents were able to look after Lauren, her youngest daughter – while Sandra and her husband Randall travelled up to Brisbane alongside Tahlia to begin treatment.

Sandra and Randall were left in a position where they had nowhere to stay if they wanted to remain by their daughter’s side.

But in a desperately needed change of fortune, the Leukaemia Foundation offered the Evans family accommodation close to the life-saving treatment Tahlia needed.

“I can’t explain what a difference this offer of accommodation was to our family. We didn’t know what else to do or who to turn to.”

The lifeline of accommodation and other forms of financial assistance was just the beginning of the care the Leukaemia Foundation were able to provide for Sandra and her family.

Maryanne, a Leukaemia Foundation Healthcare Professional, was there at every step for Sandra and her husband – making sure that they felt heard and supported.

Having a child with cancer is an arduous journey. Maryanne helped normalise the experience and acknowledged as a parent I had intense emotions and that was okay.”

“It is so reassuring to know that over the years, each time I’ve needed the Leukaemia Foundation for support to deal with new late side effects of Tahlia’s treatment, Maryanne has such a great understanding of our family.”

After more than six months of intense treatment, Tahlia continued her chemotherapy from the comfort and familiarity of home in northern NSW, helping her regain some sense of normality.

Although Tahlia doesn’t remember much about her blood cancer diagnosis, she’s still feeling its impact as a young adult today.

Tahlia endured many rare side effects from her treatment, including life-threatening reactions to some of the chemotherapy drugs.

In the first six weeks of treatment alone, she was admitted to ICU three times, fighting septicaemia, thrombosis in her brain and an anaphylactic response.

“I’ve developed avascular necrosis in my ankle, which is where bone tissue dies due to a lack of blood supply. I’ve had to have resulting surgery and ongoing chronic pain management,” explains Tahlia.

“Another two drugs I was treated with have side effects that impact fertility in childhood cancer survivors.”

“Even now, the late effects of my blood cancer treatment impact my life as it still stops me from participating in activities. I am learning that whilst my journey with blood cancer ended over a decade ago, my physical health continues to be an area of concern and potentially an area of my life that I have to cope with.”

As the now 23-year-old Tahlia navigates long-term survivorship, Leukaemia Foundation support is still there for her.

She’s reconnected with Maryanne, the caring Leukaemia Foundation Healthcare Professional who has supported her family over the years.

“Maryanne and I have a special relationship because she always makes an effort to ask, to listen, to care and to help after every discussion we have. She remains in contact with me about university, my health, appointments that are coming up.”

“I contact Maryanne when I have questions or am wondering about any late effects of my blood cancer treatment that I could experience. She makes it easy to talk about topics that are sometimes really difficult for others. She has a beautiful heart and is only a phone call away.”

In 2009, Sandra released a book documenting her and Tahlia’s blood cancer journey, called ‘Eight Seasons: Our family’s journey with childhood leukaemia’.

“My book really started as a bit of a journal and that was a way of channeling some of the trauma,” Sandra recalls.
I never quite believed that it would end up as a book or have perhaps such relevance to the cancer community that it has, but I had this really kind of driving need to record our journey. Because I felt that it was such a significant one and one that I wanted Tahlia to be able to look back on and remember her struggles. But more importantly, as a record of her strength.”

Reflecting on her journey as a ‘silent patient’, she has some strong advice for parents raising a child who has been diagnosed with blood cancer.

“Young children tend not to recall their treatment experience with the same details as their parents,” Sandra says.

“So remember that you might need to allow yourself time to process the trauma.”