50 years on from Karen’s Acute Lymphoblastic Leukaemia diagnosis

This year celebrates 50 years since Karen’s initial diagnosis of Acute Lymphoblastic Leukaemia (ALL).

When Karen was diagnosed in 1973 at three-and-a-half years of age, her family were told she had a five percent chance of survival.  Had she been diagnosed today; her chance of survival would be 90 percent.

It was a tiny glimmer of hope, but one Karen’s family held onto tightly as she was admitted to the Royal Alexandra Hospital for Children (now The Children’s Hospital at Westmead (CHW)) to begin treatment.

Karen’s treatment involved four weeks of cranial radiation and four years of chemotherapy.

During the 1970’s, parents were not allowed to stay overnight with their children and visiting hours were restrictive. Difficult for children of such a young age to comprehend.

There was no support or literature available for parents to read, making the psychological challenges of a childhood cancer diagnosis even more difficult to digest.

“I still remember my initial admission; it was daunting being left alone in the ward at that age.  There was no Oncology Treatment Centre, no colourful pictures to see, but the nursing staff did their best to help us feel at ease.  I used to love playing with the typewriter at the Nurses Station,” Karen said.

“Back then, there was no anaethesia or sedation for procedures such as lumbar punctures or the administration of chemotherapy.  When the cranial radiation was administered, I was packed in pillows hoping that I wouldn’t move. There was no protection for any scatter radiation and radiation masks definitely didn’t exist then; purple lines were drawn down my face to mark the area where the radiation treatment was to be administered.”

Karen never wore a wig once she started chemotherapy and began to lose her hair. She says she just wanted to be a normal kid enjoying life.

Defying the odds, Karen reached the age of 13 and received life-changing news; she was cancer free.

After many years of interrupted schooling, Karen says she battled through the remainder of school, and with inspiring resilience, graduated from high school in 1987.  It was then she decided to begin nursing studies, to give back to the medical profession which had saved her life.

“My dad thought I was crazy, but my mum and nan thought it was a wonderful thing to do.”

Karen completed her nursing degree and accepted a new graduate position at Westmead Hospital, but as time went on, she felt more and more drawn to paediatrics.

The next chapter of Karen’s journey saw her step back into the doors of the hospital she had spent so much of her childhood in as a patient, this time dressed in nursing scrubs.  She began her first role in paediatric as a nurse in CHW’s Operating Theatres, providing care for children just like her former self.

Now 53, Karen hasn’t looked back, dedicating 31 years of her nursing career in the Operating Theatres, most of which has been at CHW.  Along the way, she completed a Masters of Advanced Practice and rose through the ranks to her current position as Clinical Nurse Specialist in General Surgery, where she passes down her knowledge and expertise to the next generation of nurses.

“When I started working in paediatrics, I knew I had found my place in life.  I couldn’t see myself doing anything else; I just want to be there to care.  I love working with children, and every day is rewarding.”

“I do a lot of education with new graduates, nursing students and new staff, and try to support them as best I can as they navigate the unique pathway of theatres. I enjoy relaying my skills to others and always try to do with patience, detailed explanation and advocacy for the children in our care at the forefront.”

Reflecting on the incredible progress that has been made in childhood cancer over the past half century, Karen said she’s very happy to see how far treatment and care for children with cancer has come.

“Not only has the medical field come in leaps and bounds with dramatic changes in treatment and survival rates; there is so much more literature and support groups available for the families.  This is so important during such a trying time in their lives. My parents had no literature or people to talk with when I was first diagnosed. It was a very daunting time, not knowing anything about this condition and what the treatment would entail.”

While the long-term impacts of treatment are increasingly impacting Karen’s health, she’s grateful for the second chance at life she’s been given and says experiencing motherhood and giving back to sick kids and their families in her everyday life means the world to her.

“I wouldn’t be here today without the medical teams and nurses who did the best they could with the resources available to them at the time. I’m proud and humbled that they were able to keep me here, and I’m grateful to contribute even a small piece of the pie by giving back to sick kids today.

“I think having cancer has made me a better person, a stronger person, and I don’t think I’d change my life for anything.”