Our Story....

 Last week was

Brain Cancer Action Week..

Brain Cancer Action Week is an awareness and fundraising initiative of Cure For Life Foundation, working in collaboration with the Cancer Council NSW, Cancer Institute NSW, NSW Oncology Group Neuro-Oncology, Grey Matters, Sydney Neuro-Oncology Group, and Brain Tumour Alliance Australia.
The aim is to increase awareness and funding for brain cancer. Brain cancer is the least understood cancer in Australia, despite being one of the most fatal. Research projects supported through Brain Cancer Action Week will help to identify people at risk, provide the most effective treatment options, and help develop new therapies that will extend the lives of patients.

and this awesome champion for the cause and leading neurosurgeon was a huge part of our story....he is off to address the US Congress this week...joining forces with others to bring about a  faster cure for the tragedy that killed approx. 1,200 Australians (including children) last year .

So I thought maybe this was a good time to share our story...the story of our beautiful Taylor....

Not sure how long this will take me to tell..or in fact if I will find this easy .....but as the days, weeks and years go by I realise we do have a story that needs to be shared not only with our other children and family but for the others that are touched by this every day..... 

MID JULY 1998....

My mum at aged 54 passed away after an 11 week battle with bowel cancer.....we had just found out we were expecting baby number two...Taylor had just turned two in March.

We found ourselves at the doctors a week after mum's funeral with Taylor appearing under the weather ....maybe a tummy bug...best stay in overnight at the local hospital to get some fluids in to her.

By morning it was very clear and terrifying that the fluid intake had exasperated something, causing seizures.....rushed to the city for a CT scan at the major children's hospital...this began the feeling that life was hurtling out of control.....

I clearly remember telling anyone who would listen that I had just lost my mum and this couldn't possibly be happening....

The CT Scan revealed a large tumor which was given the name

CranioPharayngioma.....a benign cyst like tumor right in the centre of her brain...in the hypothalamic and pituitary  area. The type of tumor that actually had begun forming during embryionic stage but had accelerated in growth ...something that was not expected to have been seen in a Two year old.......

Welcome to the world of brain cancer.....I was the teacher in the family ...my sisters were the nurses..I we couldn't do this.......

Taylor required surgery immediately to relive pressure and insert shunts into the skull to help allivaite the effects of the fluid that had been pumped in over the last twenty four hours.

We arrived in the intensive care unit, shell shocked and wondered why all the other parents looked like they were comfortable and we were clearly in very foreign territory......we were told that with in a day or so that would be us too.....sure enough it is an environment that becomes very "safe" very quickly and we made some firm alliances in there that saw us through some dark days.

We heard for the first time in those early days that she was a "unique case" that required much thought......this would be the first of many times we would here this statement in our journey.

After a week we were sent home, while all those in the know consulted around the globe as how to proceed....surgery was then set for two weeks time......

The way forward entailed surgery to remove the tumour....not without it's side effects....starting with death right through to the disturbance of hormonal and hypothalamic function......what choice did we have...so knowing as best we knew we sent her in with the full force of pray and petition that God would protect our baby.....

Little did we know of a man on the other side of our country that was doing ground breaking things in the field.

After an 11 hour surgery  we had a baby back....in tack...well, little did we know that the "hormonal disturbance " that we were sure was something that could be managed quite easily., would prove to be a huge learning curve for us both.....we had her ...ALIVE....

The fun began......she no longer had pituitary function.....no growth hormone production....messed sleep , appetite, thirst, moods....water work controls......the list went on...the therapeutic regime kicked in immediately and the cocktail of requirements to keep her balanced was something that was to quickly become second nature to us.....

My petite little 12 kg baby left hospital two weeks later tipping in at 20kg....the body just went haywire....but we had her and she was ALIVE

Surgery had gone well...not sure that it was complete but close enough they told us..........   

to be continued....