Your white blood cell count is much higher than expected.”

That is the sentence that reshaped Kylie DellaBarca Steel’s world in an instant.

“Breathe, Kylie. Just breathe,” she thought.

Then came the life-altering news: “You have chronic lymphocytic leukaemia.”

In her own words, that is how the then-40-year-old wife and mother remembers that pivotal moment. 
That was in 2022.

Now, the Kylie is participating in a clinical trial from where she lives in the Bay of Plenty. Her three sons are aged 5, 10, and 12.

Hoping to encourage, inspire, and walk alongside others on this difficult journey, DellaBarca Steel is sharing her cancer journey on her blog “Courage, Love and Legacy.”

She has recorded a podcast for Parent Place and released a video-log series on an international cancer care platform, Patient Power.

“It’s such a privilege to put together and share my stories with an international audience, but it has really hit home just how far behind we are with the treatments available for patients in New Zealand,” said DellaBarca Steel.

There are roughly 2000 CLL patients in NZ, with the average age for a CLL diagnosis being between 67-72 years, so DellaBarca Steel is in a rare category. Less than 5 per cent of people are diagnosed under 50 years.

While CLL is also known for being slow moving, DellaBarca Steel once again finds herself in a rare category with exponential growth of her lymphocytes in the first 18 months, requiring early treatment.

As this type of blood cancer is currently incurable, DellaBarca Steel will need to rely heavily on the treatment options available in NZ to survive until her children reach adulthood.

“I am very grateful that, earlier this year, when facing the very hard decision of inflicting chemo on myself and my young family or trying to self-fund a more targeted therapy, a clinical trial came up just when I needed it.”

She knows others are not as lucky.

CLL is a relapsing and remitting disease, meaning that access to several treatment options with different modes of action is required to keep people living.