27 February 2024

Wollongong woman's message of hope in fight against disease impacting one Aussie every 27 minutes

| Dione David
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Leukaemia survivor Nikiya Love and her husband Dave

Nikiya Love and her husband Dave encourage support in the fight against a disease impacting one Aussie every 27 minutes. Photo: Nikiya Love.

For Wollongong’s Nikiya Love, falling pregnant had been a journey, so when she started feeling unwell her husband Dave suggested she take no chances, and see her doctor.

What started as a precautionary check-up led to a series of tests at Wollongong Emergency Department, and within 24 hours, the mum-to-be received news that rocked her world.

“I hadn’t been too alarmed because what I had been feeling, you could mostly put down to pregnancy symptoms. My concern was for my baby,” she says.

“The staff were very vigilant and attentive, and I remember clear as day saying to my husband, ‘Typical doctors, always thinking worst case scenario’.

“A few hours later, on Friday 20th May 2022, as I sat in the maternity ward, they said, ‘We’re sorry to inform you that you have acute lymphoblastic leukaemia, and we need to start treatment right away.'”

The next few days Nikiya was in a whirlwind of analyses and treatments including chemotherapy.

“I was so overwhelmed and my husband said, ‘You just have to take it day by day’. I remember telling him, ‘I can’t, I am taking this test by test, hour by hour’, because every hour, every test was changing the trajectory of outcomes for mine and my baby’s lives,” she says.

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Sadly, a day shy of 18 weeks’ gestation, Nikiya lost her baby.

“We had named her Lexi,” she says. “I believe she saved my life. I will forever be grateful for that gift from my baby girl.

“It was harrowing and horrific, but treatment couldn’t stop.”

Thanks to an early diagnosis, the prognosis was hopeful. Nikiya went into remission after her first round of chemotherapy, but was advised that she would need a bone marrow transplant for a long-term cure.

The following nine months, as she grieved the loss of her baby and weathered the side effects of treatments, were the darkest in her life.

Just a few weeks in, her hair started falling out – the physical manifestation of losing control over her body.

“I don’t have the attachment to my hair some people have. I’ve never coloured it; I’m not one to go to the hairdresser. So I was surprised at how it hit me,” she says.

Her husband offered to shave his head in solidarity. Instead Nikiya suggested he grow the “glorious Greg Brady-esque afro” he had been known to sport in his youth, and only cut it when she had her first haircut.

“He was a good sport. It became an ongoing joke among the medical staff at the cancer ward because at each treatment cycle, his hair would get more and more outrageous,” Nikiya laughs.

“My sister Natalee, who had the most beautiful natural long strawberry blonde hair – hair that I’d been envious of my entire youth – suggested they kick it up a notch and join the World’s Greatest Shave.”

Other friends and family wanted to get in on the action and eventually, a team of seven called themselves “Love Locks Down” and set a fundraising goal of $10,000.

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About 20,000 people sign up to participate in World’s Greatest Shave each year, helping the Leukaemia Foundation’s goal of zero lives lost to blood cancer by 2035.

COVID presented the most formidable challenge the organisation had faced in its 26-year history. Community events were cancelled, and fundraising took a significant hit, impacting the work and support the Leukaemia Foundation provides.

The foundation has also experienced a 37 per cent increase in blood cancer patients reaching out for financial assistance in the past financial year, with many struggling to make ends meet in the face of rising costs of living.

In Australia today, one person will be told they have blood cancer every 27 minutes, and 16 people will lose their battle with the disease. An estimated one in 12 Australians will be diagnosed with blood cancer in their lifetime. Of those diagnosed, one in three Australians will not survive five years after their diagnosis.

In February 2023, Nikiya received a bone marrow transplant from an anonymous German donor, and in March, the day before the official World’s Greatest Shave took place Australia-wide, she left the hospital.

By then Love Locks Down had smashed its goal, raising $28,642 for the Leukaemia Foundation.

“It was a terrifying time. There are a great deal of things that can go wrong in a bone marrow transplant and for many people, it can be fatal. But in a situation over which we had no control, here was something we could do,” she says.

“Whenever it was too much, I could click on the Love Locks Down page and see the remarkable outpour of support – from friends, family, medical staff, business partners. It’s hard to put my gratitude into words.

“Together, we were making a difference. It made me think about Lexi. I thought – if not with her, then for her.”

Join World’s Greatest Shave today.

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