A cruel diagnosis for a precious young life

Electrician Nick Tsanadis and his wife, school teacher Marly, had what would be regarded in NSW as a traditional family, with a 4-year old daughter (Demi) and a 2 year old son (Will).

Like many others in our community, however, a tragic diagnosis has instantly changed their family’s lives for ever.

As a pre-school teacher, Marly was very familiar with the development cycle of youngsters and noticed some worrying recent changes to Demi, in regards to balance and other behaviour.

After consulting a paediatrician, an MRI scan was scheduled but events at home encouraged Marly to take Demi to the Emergency Ward, where the MRI was brought forward as an urgent requirement.

Demi was diagnosed on 5th April with Diffuse midline glioma (DMG), a universally fatal paediatric brain tumor, which strikes just 20 children in Australia each year. These grade 4 tumors are extremely aggressive and fast-growing, with median overall survival of eight to eleven months from the time of diagnosis. The cancer is both inoperable and incurable.

Chemotherapy is not an option for young Demi, who is currently undergoing radiation therapy 5 days a week, for 3 weeks, at Westmead Children’s Hospital.

This will be followed by a further 3 week barrage of radiation, as the medical team seeks to slow the progress of the cancer.

A patient undergoing the radiation treatment is required to remain still whilst the treatment is being conducted. This is obviously impossible for a 4-year old so Demi is required to undergo general anaesthetic for every treatment. “I cradle her in my arms whilst they administer the anaesthetic, then she will collapse into me and I lay her down on the bed,” said Nick.

Demi Tsanadis.

Both Nick and Marly are struggling at times to both cope and absorb this sudden development in the lives of their young family.

“I’ve been alternatively frustrated, angry, quick to cry on so many occasions,” said Nick.

“We’ve met a lot of parents at Westmead who are in a similar situation to us in regards to their child’s ill-health and it helps to talk to people going through similar experiences and challenges,” said Marly.

“We’ve joined an existing Whattsap group with children of other DMG families and we support and offer comfort to each other where possible.”

Nick and Marly have also been offered entry to new trials, which will take place at Randwick (Sydney Children’s Hospital).

The sheer weight of the family’s situation, especially as they are still young parents and children, could be catastrophic but Nick and Marly have a big family, and everyone has been quick to offer support, both physical and mental.

“Demi knows what a truly remarkable kid she is,” said Marly. “We won’t leave a stone unturned to find more treatments and get more opinions. Life can be so cruel and unfair but we want to continue to fill her young life with love and happiness and Nick and I will continue to be the pillars of strength she needs at this time. We love our beautiful princess!”

The Children’s Hospitals in NSW rely heavily on fund-raising and encourage community involvement to aid vital research and treatment.

Whether you organise your event through your company, colleagues, friends, the community, school or club, you can help raise funds for children in need and have fun at the same time. You can find out more about fundraising by visiting www.schf.org.au/