Elliott Miller. In the words of his mother…

To mark global sarcoma month, CRBF will be conducting a series of interviews, and publishing tributes to patients and loved ones affected by sarcoma, in an effort to portray the human side of this insidious cancer.

I met Henrietta Miller late last year, after she took the time to reach out to me, when I was in the depths of despair after Cooper’s passing.

Henrietta is a gentle and quietly spoken woman, with a huge capacity to give to others.   I was pleased I had accepted her invitation to visit, as she is one of the few people who can say they deeply understand the myriad of emotions, and the never ending wall of grief you experience after the loss of a child.

Henrietta’s son Elliott had tragically passed away prior to Cooper, and was treated within the confines of Chris O’Brien Lifehouse as Cooper was, and treated by many of the medical team who had also treated Cooper.  It was indeed not lost on me our commonality was borne through deep seated tragedy, and at times throughout our conversation, and through the tears, I found myself wondering why it was we were brought together by circumstances that really should never be?  Our boys were bright shining lights at the very beginning of the wonderful lives ahead of them.

I will never forget Henrietta’s serene manner, and the selflessness, and kindness she showed our family, by reaching out to us at a time when we were at our lowest ebb.  It must have been very difficult to do so, knowing that it would undoubtedly open wounds of the past, yet this amazing woman put her own emotions aside to help others.

Today we celebrate the essence of Elliott Miller, in Henrietta’s words…

 

 

Elliott John Miller 27/12/94 – 01/03/16

 

Elliott was a second year arts student at Sydney University majoring in performance studies. His was a fairly typical lifestyle for such a student, many late nights with the occasional burst of essay writing to just about keep things on track. Taking every opportunity to perform, he spent the better part of 2014 concurrently rehearsing at least five shows and dedicated 2015 to his burgeoning career as a director. The only complaint anyone could ever make about Elliott was really a complaint about a lack of hours in the day in which to gain an audience with him.

In August 2015, Elliott had been complaining of a sore jaw when he ate, but trips to his dentist and x-rays had not shown anything untoward. In mid September though, a specialist dentist finally ordered an MRI scan which revealed a tumour. Following a biopsy his initial cancer diagnosis was Ewings Sarcoma, but this was later changed to an embryonic Rabdomyosarcoma; an incredibly rare form of childhood cancer, one that only affects about seven adults a year worldwide.

In October 2015, with all our lives inextricably changed forever, Elliott began chemotherapy  and radiotherapy at the Chris O’Brien Lifehouse, under the care of Professor Tattersall. Unfortunately, despite everyone’s best medical efforts, nothing could halt his tumour rapidly spreading from his jaw to his lungs where it continued to grow.

Elliott died on 1 March 2016, a little over four months after his diagnosis. He was 21 and on the cusp of an incredible future. Elliott performed right to the end, and never lost his sense of humour or the ability to saunter onto any stage, own it and make people laugh. Whether as a stand-up improv comedian, actor or director, Elliott never failed to impress.

He and his enormous potential are deeply missed by all his family and his extraordinary number of friends.

ACRF & The Centenary Cancer Research Centre provide much needed hope for sarcoma patients

ACRF together with the Centenary Cancer Research Centre provide hope for sarcoma patients

 

On the 30th May, I had the pleasure of attending an Australian Cancer Research Foundation function, where key speaker, was Professor Phillip Hogg, Director, Australian Cancer Research Foundation (ACRF) Centenary Cancer Research Centre, Centenary Institute, spoke at length about PENAO, which is an experimental anti-cancer drug which he invented.After searching the globe for experimental treatments for our son Cooper, which showed signs of efficacy for rare cancers such as sarcoma, it was indeed a relief to finally hear there has been headway made in this crucial and much needed area of research.

PENAO has recently completed a Phase I clinical trial in patients with solid tumours at three hospitals in Australia.  It inhibits an enzyme central to sugar metabolism in tumour cells called mTOR, and combines very well with another mTOR inhibitor, everolimus.  Everolimus is an approved cancer drug.  Together, these drugs deplete cancer cells of mTOR.

A Phase I/II trial of PENAO in youths and adults with sarcomas that have an activated mTOR pathway based on mutation analysis is being planned.

mTOR pathway aberrations include PIK3CA mutation, biallelic PTEN loss, TSC2 mutation, Akt mutation, etc.  The Phase I component is 2 x IV PENAO dosing per week to define the Phase II dose.  The Phase II component is PENAO + oral everolimus.

ACRF funding helped establish a world class Centre for Basic and Translational Cancer Research on the Royal Prince Alfred Hospital site. This state-of-the-art facility houses the basic and translational research components of a Comprehensive Cancer Centre (only the second in Australia). The new centre extended the reach of basic biological research on cancer and its translation into cancer prevention and control.

The Centre was officially opened in March 2016.

Grant applications - ACRF this year will include:

  1. 2018 $10M Major grant
  2. 2018 Annual grant

The Cooper Rice-Brading are proud to provide our continued support the Australian Cancer Research Foundation.

Trump signs ‘Right to Try,’ says it will save ‘tremendous number of lives’

Please take the time to read this very relevant development in the United States, which will make a quantifiable difference to those patients who have exhausted mainstream treatment options.

This process in Australia, can take many weeks to facilitate, and this is time a terminally ill patient does not have.

Despite our political persuasions, this is a positive step forward for a marginalised group currently without a voice.

Garvan Institute – Sarcoma Research

Using whole-genome sequencing to research deeply into our DNA has led to the discovery that all disease is linked to genetic mutations so that instead of trying to treat disease symptoms, we can now target the mutations causing them. This is personalised medicine.  Read more about the outstanding work of the Garvan Institute, providing untold hope for sarcoma patients.

https://www.garvan.org.au/research/diseases/sarcoma/research

Therapeutic target for Ewing sarcoma

The sarcoma research group of the Bellvitge Biomedical Research Institute (IDIBELL), led by Dr. Òscar Martínez-Tirado, has identified a potential new therapeutic target for Ewing sarcoma, the second most frequent bone cancer in children and adolescents, and a tumour known by its aggressiveness and tendency to metastasise.

https://www.news-medical.net/news/20180405/Researchers-discover-potential-new-therapeutic-target-for-Ewing-sarcoma.aspx