Despite advancements in care, there remains a troubling cancer health divide affecting many different communities across the country. A divide that 32-year-old Carlia Van Den Hoek knows all too well.

In September 2010, Carlia, who was 24 weeks pregnant at the time, was diagnosed with diffuse large B-cell lymphoma (DLBCL).

At the time of her diagnosis, she was living in Darwin with her husband David and two-year-old daughter Eulalia.

In the weeks and months prior to receiving this crushing news, Carlia began to feel ‘very unwell’.

“I had terrible morning sickness, and I lost a lot of weight. When I first found out I was pregnant, I was experiencing very similar symptoms. But they got worse and worse,” Carlia recalls. “I wasn’t excited at all. I was just so tired and sore.”

Carlia’s symptoms got to the point where she could no longer look after her daughter, and with David away for work, she turned to her mother-in-law for some desperately needed assistance.

Carlia was still unaware that her symptoms weren’t just due to her pregnancy. “We didn’t realise that it was actually the manifestation of the developing lymphoma.”

Many blood cancers are rare diseases that are difficult to spot. Sometimes this can result in a misdiagnosis, referral to the wrong specialist or a delay in treatment.

Because her symptoms were blurring the lines between pregnancy and blood cancer and the limited knowledge about blood cancer amongst medical professionals in the area, her diagnosis was delayed. Worryingly, 1 in 3 people with blood cancer report delays in getting referred or are incorrectly referred. These delays are likely to be worse for regional Australians like Carlia.

Numerous blood tests and GPs failed to detect anything wrong with her other than common pregnancy-related conditions. “Cancer didn’t cross anyone’s mind, including our GP’s,” Carlia says.

By the time her blood cancer was confirmed, she was in a critical state and precious time had already been lost.

“A lot of people get diagnosed earlier than I did. When I finally got my diagnosis, I was in a matter of life and death. We were in survival mode,” Carlia describes.

Carlia’s initial feeling of shock quickly turned to concern for her unborn baby, as conversations started to arise about a potential pregnancy termination.

Carlia was soon faced with a heart-wrenching decision no parent should ever have to make.

“They gave us the choice about the termination,” Carlia recalls. She was deemed strong enough to continue with the pregnancy, however she was also told that the chemotherapy could potentially be fatal for the baby.

“We decided to take the risk and continue with the pregnancy.”

Thankfully, at the 34-week stage of her pregnancy, Carlia slowly regained enough strength and gave birth to Arden, a healthy baby boy.

“[The birth] was actually quite uneventful,” Carlia says. “He was very robust and healthy, and they whisked him off to the neonatal intensive care unit.”

But while Carlia’s pregnancy ended in a successful birth, her blood cancer journey was just beginning.

Due to concerns about the baby and how it would respond, Carlia remained on weaker forms of treatment until after the birth. Once Arden was born, it was – as Carlia describes – time “they pulled out the big guns”.

“They put me on a protocol called hyper CVAD, which is very, very potent.”

While she was fully aware of the damage that chemotherapy does to the body, she also acknowledges that it was essential.

“I hate chemo. It’s poison. It’s horrible. But I’m grateful for it. It was life-saving. I didn’t care about the side-effects. I was just so grateful that I was having it because it was making me feel better and recover.”

On New Year’s Day 2011, a day that was meant to symbolise a fresh start for the Van Den Hoek family, came further despair when Arden landed back in hospital.

“He contracted hand, foot and mouth disease, and basically had no immune system. My poor husband was upstairs in the children’s ward with Arden, who was basically at full term, having seizures. They didn’t know what was wrong [at the time].”

“All while I’m downstairs having chemo in the cancer ward. That was awful. That was probably the darkest time, because we didn’t know what was happening with him.”

Arden was later diagnosed with cerebral palsy, likely caused by a brain injury suffered during this period when his immune system was ‘minimal’.

After numerous rounds of chemotherapy, Carlia was then told that she needed to relocate over 3000km to Adelaide for a stem cell transplant. This was because Darwin had limited specialist healthcare professionals and services required for the procedure.

“I was actually slightly terrified,” Carlia recalls.

Carlia found herself not just facing a trip to the other side of the country, but with nowhere to stay once she arrived. That’s when the Leukaemia Foundation stepped in.

The Van Den Hoek family were provided accommodation close to the hospital in Adelaide, during Carlia’s six-months of treatment.

“It was a god send,” Carlia says. “Whatever we needed, the Leukaemia Foundation was there and that was really, really comforting. I sing the Leukaemia Foundation’s praises everywhere I go.”

“[They] support people like me in the most traumatic times of their life. It’s practical help when you’re terrified. And it really makes a huge difference.”

Carlia’s stem cell transplant was a success, and nearly 14 years on, she remains cancer-free.

However, although her treatment journey was over, it left a significant mental toll.

“It took me a long time to sort of move forward from all of that. I’m a big advocate for mental health, especially post-treatment, because I think a lot of people underestimate how long it can take some people to recover from such trauma.”

Today, Carlia and her family continue to thrive, with their blood cancer experience remaining firmly in their rearview mirror.

“Arden is 14 in November and he’s doing well. He’s very happy. He’s had to have a couple of major surgeries on his legs because of the cerebral palsy down in Adelaide, and he’s recovering from the second one now. So he’s in his wheelchair a bit but he’s getting better at walking.”

“Eulalia is 16, which is terrifying and is a real animal whisperer. She doesn’t really remember much about that time. We’re trotting along quite happily, and we’re very lucky.”

While Carlia has returned to a ‘new normal’ life with her family, many patients who come from regional and remote areas aren’t so fortunate.

Everyone with blood cancer deserves a fair go when it comes to getting diagnosed quickly and receiving the best possible treatment and care, no matter who they are or where they come from. It’s time to end this lottery and close the cancer health divide – for good.

That’s why the Leukaemia Foundation is raising awareness of the challenges faced by Australians living in regional and remote areas and taking action to help close the gap.

This includes increasing awareness of blood cancer among healthcare professionals in regional Australia, developing new resources for priority population groups and raising funds to spearhead new initiatives and research.

We also recognise there are other communities of people who face a poorer blood cancer experience including older Australians, lower socioeconomic groups, adolescents and young adults, those living with a mental illness and those with disabilities.

By raising awareness of the challenges unique to these priority population groups and providing them with increased resources and support, Australians like Carlia will receive an earlier diagnosis – as well as access to the best possible care from healthcare professionals. Resulting in better health outcomes for these communities.

To learn more about the challenges that priority population groups face, for support or to get involved, visit bloodcancer.org.au.