IN May this year, we covered the story of 4-year old Demi Tsanadis, who had been diagnosed with Diffuse midline glioma (DMG), a universally fatal paediatric brain tumour which strikes just 20 children in Australia each year.
Twin Creeks Golf & Country Club was one of a number of clubs which reached out to the Tsanadis family, hosting a fund-raising golf day on their behalf.
These grade 4 tumours are extremely aggressive and fast-growing, with median overall survival of eight to eleven months from the time of diagnosis and the cancer was regarded as both inoperable and incurable.
Chemotherapy was not an option for young Demi, who was undergoing radiation therapy 5 days a week, for 3 weeks, at Westmead Children’s Hospital.
This was followed by a further 3 week barrage of radiation, as the medical team sought to slow the progress of the cancer.
Whilst the diagnosis was bleak at the time, news of an exciting new Australian trial is being introduced
at Westmead Children’s Hospital,
and Demi will be one of the participants.
The Australian-first trial for Diffuse Intrinsic Pontine Glioma (DIPG) has just opened at the Hospital, offering new hope to children diagnosed with a devastating brain tumour.
The trial, known as PNOC-022 and led by A/Prof Geoff McCowage from Wesmead Children’s Hospital, is testing the effectiveness of a promising new oral drug, ONC201, in combination with other medications, with preliminary results showing responses researchers haven’t seen before.
For decades, researchers have
tried to find effective treatments for DIPG, with limited success and the average survival rate of DIPG is still between 9 to 18 months from diagnosis.
This new trial is hoped to be a step forward for families who were previously told there is nothing more that could be done.
Demi’s mother Marly said “Demi has been accepted in the clinical trial at Westmead Children’s and will start in the next week or two. They (staff at the hospital) think maybe the 19th of September.
“We are still learning more about the trial at each appointment and will have a greater knowledge once Demi has started.”
“Once she has started, we can give you some more information about it as we are still learning more about it each appointment.
“We do know that Demi will be taking regularly bloods once a week for the first month. One tablet onc201 is taken once a week and the other medication once daily.
“This is a global trial and Westmead is just one of the sites. Only Demi and one other Australian girl we know from our Dipg/DMG group have been put on this trial. The rest of the children are overseas in other countries. So Demi is extremely lucky to get on this trial and be chosen.”
September is Childhood Cancer Awareness Month and is an opportunity to shine a spotlight on childhood cancer, a disease that affects so many children and families across our hospitals. It is also a chance to celebrate the progress we are making in improving outcomes as our teams work towards, one day, finding a cure.