Elliott Miller. In the words of his mother – Henrietta

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.

July – Global Sarcoma Awareness Month

Yesterday marked the first day of global sarcoma awareness month.  A month where we  take the time to remember and to honour the memory of those who have needlessly lost their lives to this cancer;  provide unconditional love and support to those you may know going through gruelling treatment regimes; and to provide hope for the future for those who are yet to walk this road, and those undertaking the battle of their lives, by talking about this cancer, and donating to sarcoma research.

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.

There’s nothing like a good old fashioned Mother’s Day ‘roast’…

Below is a transcript of the speech delivered by

Mitchell Rice-Brading

at the

CRBF Inaugural Mother’s Day Breakfast

11 March, 2018.

Cooper Rice-Brading Foundation board members, invited guests, and in particular, to each mum in the room this morning, welcome.  My name is Mitchell Rice-Brading, and it is my brother’s name, that the Foundation proudly bears. I would like to thank you all for taking time out of your busy schedules to support the Foundation this morning.

It is indeed a pleasure to stand before you, and to embrace this celebration of a day, even though a number of us in the room will be thankful we actually remembered Mother’s Day this year. As sons and daughters, we celebrate the fact we dodged yet another bullet, that would see us otherwise trying to find a Coles flogging a box of Lindt chocolates at 50% off on Sunday morning. Never mind the fact we’re generally horrifically hungover, and are taking trips to the bathroom every 15 minutes during brunch. Of course, mums never articulate their disappointment, but you can tell they take some joy out of watching us squirm, and the icy stare says it all…

Jokes aside, no matter how much we do, or do not show it, we all remain grateful for the presence of mums in our lives. This particularly applies to matters of appearance. I’m sure I’m not the only one in the room here who receives feedback on their attire. I mean, I for one don’t know how I’ve coped without mum’s daily hints and tips over recent years, since spending less time at home. In fact, it’s really a testament to mum that I’m talking up here today fully clothed. Looking ahead 20 odd years, I can see a day when I’m visiting mum, like the caring son I am, and despite the fact she’ll be closer to *mumble*, her inner Alex Perry will appear, and she’ll comment on what I’m wearing. Ah well, at least it’ll be easier walking out of the cheapest retirement home in Sydney, knowing my decision to ship her out to Blacktown had been validated.

I should give everyone in the room some context for my comments here. All these bits of advice on my outfits, come from the same woman who took pleasure out of dressing coops and I in matching sailors outfits as innocent and helpless toddlers. Apparently looking like back-up dancers for the village people wasn’t enough, and we were also forced to rock haircuts where I can only assume we ran into financial trouble and couldn’t afford a hairdresser, so mum placed bowls on our heads and shaved anything that was visible. The result had us looking like we belonged next to the Beatles during the 60s, and fortunately, there are a pair of charcoal drawings on our walls ensuring our bowl cut phase is preserved forever. Not a dinner party goes by where the two creepy kids on the wall aren’t brought up, so thanks again mum for ensuring the good old days have been immortalised.

I should also mention mum’s prowess in the kitchen. Many of you here today will know mum as a very proficient cook, and I’m not here to dispute that, however there have been some swings and misses over the years. I distinctly remember one morning, where after weeks of unsuccessfully trying to get coops to take his morning fish oil tablet, mum decided to take things into her own hands. She very sneakily squeezed the fish oil under his omelette, operating under the assumption it would go unnoticed. It didn’t. “Muuuum my omelette tastes disgusting, what have you done to it”. “Nothing cooper, there is nothing wrong with it, now please stop complaining and eat it”. Of course, there was something wrong with it. There was fish oil in it, and that’s disgusting, but hey you can’t blame a mum for trying.

Now I know many of you will have parents on social media, and I know a similar amount of you will have parents who don’t know how to use social media, but I still think mum takes the cake. There are no two ways about it: it should be legislation that my mother is not allowed near an Instagram, Facebook, or Twitter account. However, until Mr Turnbull responds to my emails, we will continue hearing stories like these. Recently, I was messaged by a friend, saying that the Foundation Instagram page had put up an interesting insta story. I thought nothing of it, only to check the insta story, which is visible to all, only to be greeted by none other than mum, staring at the camera, unintentionally zooming in and out on her confused face five times. I could ask mum 100 times to put up an insta story, and every time she would honestly say she has no idea. But in my opinion, she saved the best for Dad, when she was under his alias on Facebook. thinking she was using the Foundation’s page, mum got excited when she saw the “add friend” button, and pressed away at familiar names and faces. Shortly after, I was made aware to the fact my father had been adding not only several of my friends, but also boys and girls from several years below. I need not elaborate on how uncomfortable this was for all involved, for so many reasons. So, if you’re listening Mr Turnbull, please get back to me A.S.A.P.

Mum wanted me to keep this introduction light-hearted this morning, and don’t worry I could stand up here all day rattling off anecdotes about her fails as a mum, but it would be remiss of me not to mention her qualities as a mother, and a person. For every fish oil infused omelette, there have been at least like, maybe 10 non-fish oil infused omelettes. Of course I’m kidding – Coopsand I were blessed growing up with daily hot breakfasts, and I know for a fact friends loved coming over for sleepovers, because breakfast itself was normally a 3 course meal consisting of fruit, eggs and bacon, and pancakes. Every morning we were driven to school, despite living one short bus trip away, and every weekend she’d be on the sidelines supporting us with our footy and cricket. In fact, this support was often audible. Very audible. I knew I’d done something good when I heard that familiar shriek reverberating across the field we were playing at. And of course, there’s her tireless work for the Foundation, ensuring the legacy Coops started is carried on valiantly, by putting on beautiful events like this one today. So mum, I want to thank you for being the kindest and most generous person I know, and don’t ever stop asking me if I would consider trying that other pair of pants on?

And to all the mums out there, I’m sure your own boys and girls will remind you over the weekend, but thank you for putting up with us. Thank you for picking us up when we got too drunk on goon at a party whilst underage, for cooking us dinner when we said we would be home and then we weren’t, and for letting us use the car for a couple of hours, and then not seeing it again until it needs to be filled up with petrol several days later. We all love you, and are blessed to have you in our lives.

Thank you for bearing with me, and I hope you all continue to enjoy the rest of your morning.

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

Researchers discover potential new 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