Toni's Story

Tell us a little about you and your family (e.g. are you married, how many children, approximate age group)

Our family is made up of 4 – me (aged 54), Dad (Ian aged 57) and our 15 year old twin daughters Jo-Dene and Lakota. Ian and I never married but have been life partners and best mates for almost 33 years.

Tell us the details of your situation at the moment.

Ian has had 3 Primary Cancers inside 11 years and he can be a little difficult, so the girls and I live just two streets away and we get together several times a day…that’s what love is about in one of its various ways.

Tell us about about the hardship you and your family are currently facing because of your situation?

Last year (2010) saw Ian with bowel cancer, several surgeries and 30 weeks of chemotherapy which was due to finish on my birthday in January this year. Just four days before his last treatment, he suffered a Grand Mal Seizure. The diagnosis was the most aggressive and invasive type of Brain Cancer (Glioblastoma Multiforme). It is terminal. It is suggested that Ian has 11.2 months from diagnosis in February 2011. Several rounds of Radiation and Chemo are only buying whatever time his body will allow. This will be the last Christmas we spend as a family. By next Christmas, we will all have said our ‘goodbyes’ – the longest and hardest goodbye I’ve ever had to meet. Mid 2010, our daughter became extremely unwell and unbeknown to us, her liver was failing massively. Originally it was thought to be leukemia. All the appropriate tests were done and came back negative for cancer. The trade was bad for bad; she needed a liver transplant. With no outward signs and no idea where it came from, it was decided to bipopsy her twin sister. More bad news – her sister has exactly the same genetic fault and also faces transplant.

Lakota’s surgery went horribly pear-shaped, was on life support for the entire month of December 2010 and not expected to live. By some miracle she did, but has been hospitalised several times since her original 82 days in hospital post transplant. News from the hospital today is that there is another surgery more than likely before Christmas 2011.

Jo-Dene is on a trial drug in an attempt to hold of transplant while their blood and biopsy results are sent to France and Austria for some sort of answer. Whatever it is… it is extremely rare. They are possibly the only two that have this devastating fault. Their lives will never be ‘normal’ and now they have to face the loss of their father some time too soon.

Do you have insurance (both inside and outside superannuation)?

We do not have insurance at this time, but I have given it serious thought so the girls will be taken care of to some degree. It is a little late for Ian, but when I can get time away from this mess it will be as priority… The spare time for me is rare but they are my hearts, they are my priority.

If you were talking to someone who was about to go through a similar experience to you, what advice would you give them?

I do have a friend doing it tough too. She has been diagnosed as terminal with Lung Disease. We advise one another often over coffee and all importantly a laugh. Her name is Donna. My mate, my confidante – an angel. Abused by her husband physically, emotionally and mentally… she finally found her way out only to find out that she now has to leave her family through illness. Life just shouldn’t be this tough now should it…