Fundraising for a Cause

This Sunday my daughter Tayla and I, along with a dear old friend and her hubby and kids will join us for our second

Sunday Mail City to Bay Fun Run. Last year Team Spirit raised $1400.00 for the Women’s and Children’s Hospital Foundation.

This year our goal is $2000.00 and we are slowly reaching our target.

The funds raised will aid the Paediatric Palliative care Service and help with their ongoing projects in supporting children with life-limiting illness.

If you would like to donate to our cause here is the link:

Last weekend an article featured in the Sunday Mail here is the link to that story as well:




Battling with the reality that we have a daughter with a rare illness, that at times was so similar to her elder brother’s was frightening. Discovering she had a rare tumour, was quite confronting. But the fact was we as parents were going through this all over again.

Hospitals are places you visit other people, we had spent the best part of Luke’s last year on this earth in hospital and we really didn’t want to be there again.

But despite this, the staff at the WCH were unbelievable…I am talking about the nurses, doctors and support staff. I felt at times that someone was looking after or maybe over us. Bumping into nurses that had looked after Luke in the oncology ward over a decade ago wasn’t easy, it was spooky but also re-assuring if that makes sense.

At the time, you don’t really think you just act, and we knew that this hospital was the best place for Tayla, they also knew our history. We as parents just wanted to find out what we were dealing with and so did Tayla.

One of the first people I made contact with after our families and close friends was Sara. She looked after Luke palliatively whilst his cancer was terminal.

We appreciated her support throughout those first few years after Luke and Cody’s deaths. Although incredibly busy with her role as Unit Head of the Paediatric Palliative Care Unit, she still had time to keep in touch.

A person I have alot of admiration and respect for on a personal and professional level, she is also acknowledged in my book.

A current winner of the 12th Annual Nursing and Midwifery Excellence Awards in 2012, well it’s know wonder.

I am sure I am speaking on behalf of so many families that have had the privilege of meeting and witnessing her incredible compassion as a nurse.
She is nothing short of a phenomenon.

Ethereal-like quality
surpasses all humanity.
Unparalleled clarity
transcends immortality.


Reflecting back on 2012 it was amazing that we made it through truthfully.

As I started writing this blog some weeks ago we were dealing with another issue at hand, and have been for the most part of the year.

In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly!

This is something we were never, ever expecting or would have ever dreamed of going through, again. But here we were dealing with a rare tumour that rarely appears in children, for the most part it is an adult’s disease.

Tayla experienced vague symptoms for some months prior, but they never really appeared to be affecting her ability to function normally. She still woke in the morning, and went off to school quite happily. These vague symptoms included; heart palpitations, anxiety, frequent urination, night sweats and dizzy spells.

It wasn’t until one morning she flopped on the sofa and complained she wasn’t feeling well, she did look pale, and her face was quite withdrawn. She also mentioned a lump in her tummy which immediately got me worried, she showed me where this lump was and I really thought possibly it was nothing, but worth a trip to the GP.

The GP examined Tayla and mentioned a possible “hernia”, but requested an ultrasound for further investigation, and this was performed that afternoon.

This lead to more scans and tests, which took a period of 3-4 days. Eventually it was apparent that she needed to be referred onto the WCH in Adelaide.

From there, Tayla was admitted that night and a biopsy to be performed the very next day. Ironically the surgeon that would perform the procedure,was the husband of the Oncologist that gave us the news some 14 years ago, that Luke’s illness was terminal. Another nurse we knew from the oncology department where Luke was treated was also now the Nursing Services Director for the Paediatric Emergency Department. She greeted us with a warm hello and hug…I don’t think we really believed this was happening.

Approximately 97% of these tumours are benign, only 3% are cancerous and these tumours are indolent or slow-growing. Tayla’s operation was carried out in April of this year, and we now find eight months on, that there are two more tumours also in her abdomen to be removed in January.

What are Paraganglioma’s

Paragangliomas are rare tumors that grow in cells of the peripheral nervous system (i.e. the nerves outside the brain and spinal cord). The peripheral nervous system can be divided into the sympathetic and parasympathetic nervous systems.These sympathetic paraganglioma may make too much adrenaline (parasympathetic paraganglioma do not). Adrenaline is a hormone that affects such bodily functions as heart rate, blood pressure, breathing, digestion, sweating, urination, and sexual arousal. Adrenaline is said to control the “fight or flight” response, or in other words, it gets your body ready to react to stressful situations.

Paragangliomas can be found in the skull region, neck, chest cavity, abdomen, pelvis, and bladder. Far and away, the most common site is within the abdomen where approximately 85-90% are located.
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*Tayla persisted with these symptoms of feeling not quite right, for some time. I suppose now I wish we had listened to her earlier. Detecting the tumour herself was quite incredible reflecting back, and has probably lead to a favourable outcome going forward!