Daniela’s Legacy

While chemotherapy and radiation therapy treatments did not work for Dee, she was able to access Paxalisib. This is a cancer fighting drug approved by the U.S. FDA for compassionate use by cancer patients, but not currently available in Australia. We worked closely with Professor Sudah Rao at QIMR Berghofer Medical Research Institute and Dee’s Canberra oncologist, who sought permission from the TGA to import Paxalisib from the U.S. As Dee was the first person in Australia to use it, the process was long, bureaucratic and frustrating. We waited while weeks passed and watched as Dee’s condition deteriorated rapidly, our hopes fading. Finally in February, the drug arrived in Canberra. As her condition declined, Dee could only take Paxalisib for two weeks before she became incapable of swallowing (a common symptom of brain tumour patients). Even in those two short weeks, Professor Rao’s testing on Dee’s blood indicated the tumours were responding positively to Paxalisib. 
 
The blood test
 
The blood testing technology, or non-invasive liquid biopsy, was developed by Professor Rao and her research team at QIMR Berghofer.  Read more about the unique technology on our Current Projects page.
 
Dee’s blood samples have been an invaluable source of information and proof for Professor Rao. This is because with early intervention, her liquid biopsy testing can show if, and how, a brain cancer patient’s circulating cancer cells respond to chemotherapy or other drugs. This means treatment can be tailored to maximize each patient’s response. 
 
We want Dee’s legacy to live on by offering an alternative to current treatment options. We want to change the approach to diagnosis so that early intervention and liquid biopsy testing becomes routine for those beginning their brain cancer journey. Raising funds to support the introduction of Professor Rao’s blood testing technology will be our first fund raising initiative for which we hope to raise $150,000.   
 
If we can do this so that every oncologist requests Professor Rao’s liquid biopsy test, we will have achieved a remarkable milestone of change in the future treatment of brain cancer and Dee’s contribution and passing will not have been in vain. The ultimate goal would be that this blood test would be something every GP could request, as a routine check for cancer cells, even before a diagnosis of cancer.
 
Dee’s legacy will live on not only in the knowledge gained by Professor Rao and her research team from her blood samples, but in the difference that knowledge will make to future brain cancer treatment.
 
We are comforted and so proud that in this way, Dee has contributed to Professor Rao’s valuable research. Dee would have wanted to do everything possible to make a difference. We truly believe that she has paved the way for the beginning of remarkable and tangible changes in the way brain cancer is treated. 
 
Together, let’s stop brain cancer before it has a chance.