Rare Cancers Australia KnowlegeBase Launch

Rare Cancers Australia have today announced the launch of their online resource, KnowledgeBase.  This resource provides an excellent overview of clinical trials, cancer specific information,  hospitals with , multi-disciplinary treatment teams, in fact a very comprehensive overview of all resources for rare cancers.  Sarcomas fall under the rare cancers category.

The KnowledgeBase is a part of RCA’s wider Patient Support Program aimed at providing patients with a centre of knowledge, guidance, advice and hope. It is a collection of invaluable resources including a Rare Cancer Directory and a list of hospitals that have Cancer Centres. You will also find a list of Multi-disciplinary Teams and clinicians that have a special interest in specific rare cancers.

This new tool provides free, round-the-clock digital access to critical cancer care information and services, which are designed to give rare cancer patients a fighting chance.

To read more press the link below

http://www.rarecancers.org.au/page/1150/about-the-knowledgebase

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.

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.

Making a lifetime of difference…

February 16, 2018

Imagine holding the same position for almost fifty years?  And then imagine that position is one of the toughest and most mentally taxing professional disciplines on offer?

Oncology Nurse Practitioner, Keith Cox OAM, or ‘Saint Keith’ as Coop used to refer to him as, is a truly unique and wonderful individual by anybody’s standards, and for 48 years, he has provided untold hope, professionalism and guidance, throughout a cancer journey, for those who are afraid, alone, uncertain, and everything in between.

 

Dr Richard Boyle (L)   Cooper Rice-Brading (Centre)   Keith Cox OAM (R)

Photograph courtesy – Chris O’Brien Lifehouse

 

Oncology is a mentally challenging, tough, and often thankless specialty, and it serves to make Keith’s 48 years of dedication to making the lives of cancer patients bearable, truly extraordinary.

For those of you wondering what an oncology nursing practitioner is, Keith’s position was a highly specialised midway point between a doctor and a nurse, and as such, for those cancer patients who have been blessed to be under his care, his role was a critical one.  It bridged the gap, and often for the patient, it was often the difference between a very good day and a very bad one.  The stories about Keith’s willingness to smooth the rough waters for those patients blessed to have been assigned to his care, are so numerous, they would require a sizeable book to record them.

Cooper, a child anxious about what lay ahead, masked in a grown man’s 6 foot 2 physique, met Keith on day one at Chris O’Brien Lifehouse, and developed an immediate connection with him, as all patients did.  This warm, calm, unassuming, gentle individual, remained with Coop throughout his treatment, and provided untold comfort during the particularly tough times, of which there were many.  He and Coop joked about many things, debated treatment options, together with ‘best practice’ (Coop was often caught turning his drip rate up to suit his sporting schedule), and everything in between.  Coop looked forward to the day when his treatment was over, and he could return as a volunteer for Keith, as he felt he had Keith’s role ‘covered’, and his contribution would be significant.  Life as we know it, rarely goes as we plan.

I can only now, imagine how with the passing of each patient Keith has opened his heart to, has resulted in the great personal sense of loss he must feel for each, yet we often overlook this impact when we are immersed in grief ourselves.  How difficult it must have been for him to face the families of the patients who do not make it out the other side?  His attachment to each was obvious – it was never a case of just another patient.  He has done this and so much more, for almost five decades, and has continuously found a way to make a difference in so many lives, and in so many different ways.

Asking Keith to join the CRBF Board, was a very easy decision.  He embodies every quality we envisage our Board members will have, together with an intimate knowledge of what is required to truly make a difference in the lives of sarcoma patients everywhere.  He was though, first and foremost, Coop’s great mate.

Keith, we wish you all the wonderful things life can bring now you are in retirement, and hopefully,  you can finally find time to reflect on your outstanding contribution to the world of cancer, and it may even see you contmeplating the notion of finally putting yourself first – every now and again…

Watch Keith’s story as told by Carrie Bickmore, on The Project.

https://tenplay.com.au/channel-ten/the-project/extra/season-9/healthcare-hero

A truly outstanding Australian…

January 27, 2018

Every now and again, you will meet someone quite by chance, and they will have a huge impact on your day, and sometimes, your life.  This was the case with Gail O’Brien, AO.

I remember a chance meeting very early in Cooper’s treatment, not long after Cooper became intent on raising money for sarcoma awareness and research, and to contribute as much as possible toward the inception of the Comprehensive Sarcoma Centre, within the world class facility that is Chris O’Brien Lifehouse.  I had no idea at the time this would prove to be life changing.

I entered the room, and met this demure, quietly spoken, yet exceptionally warm lady, who I soon felt I had known for decades.  Her day I suspected, was full, as Gail is in high demand within the confines of Lifehouse, and yet she had quite unexpectedly put aside time to meet with me to discuss ideas for Cooper’s Foundation launch.  It is important to point out that fundraising is not officially one of the many hats Gail wears within the auspices of the hospital, and yet there she was, providing her complete and undivided attention, and offering untold co-operation and guidance.  I left that meeting with a sense of calm, which I had not felt in some time.  Not only did she offer assistance with the function, Gail causally offered her time for a chat if I felt overwhelmed over the time ahead.  Cooper’s diagnosis had left our family reeling, and I often felt I was living in a bubble, and very disconnected from the outside world, so to have someone who truly understood that feeling, provided an unexpected peace of mind.

Gail forged a lovely, and very significant friendship with Cooper, whom she would pop in to visit, when she knew he was an inpatient, and in turn, Coop developed a strong fondness and admiration for her.  She was one of the few people outside his medical staff, he allowed to see him as his cancer progressed.   When his inaugural dinner was imminent, he insisted I arrange to have her address his guests, as in his words, “Gail really gets it mum…”  That was sadly the case.  Gail had not only suffered the heartbreak of losing her beloved husband, but had also suffered the unimaginable loss of her eldest son Adam, two years after.

Despite her own enormous adversities, the grace in which Gail continues to make a difference in the lives of cancer patients, is something to behold.  She is humble, yet strong, and is, put very simply, a force of nature.  For the better part, she flies under the radar, and does not seek notoriety for the work she does – she just does what needs to be done.  She has more energy than anyone I know.  I have often received emails from her very late at night, when I know she has been working at the hospital all day, and beyond.  She has time for everyone, and has perfected the fine art of listening.  The formal list of achievements which led to her receiving this award, I suspect do not even touch the surface of the things she does for others in need, outside her capacity at Lifehouse.

Gail, we could not be happier to hear of your award – Officer of the Order of Australia.  I know this is not what you aspire to, but from the outside looking in, it is so heartening to see those presiding over these awards, absolutely got it right this year.  Cooper would have been as delighted as we are to see this acknowledgement of the decades of work you have dedicated to cancer patients, together with your beautiful smile, and your lovely manner.  The world needs more people just like you…

Using your currency wisely…

January 6, 2018

Using your currency wisely…

December, 2004, saw two cricket obsessed five and eight year olds, transfixed to the television, watching Australia’s Glenn McGrath, tear through the Pakistan batting line up in Perth, finishing with a career best 8/24 off sixteen overs.  For those of you who know nothing of cricket, an eight- wicket haul is something every bowler dreams of, but rarely achieves, much less at Test level.  It is akin to winning, the Melbourne Cup, the Sydney to Hobart or the Australian open.  It takes huge talent, courage, an enormous heart, and a touch of mongrel to do so.

During commercial breaks, there would be the mimicking of each wicket taken, in our lounge, and my incessant nagging about taking the game outside.  Coop would practice his “air bowling” and after careful analysis, adopting every finite move of the cricketer he idolised.  The moment the game was over, it would be straight to the nets, to practice with a tennis ball. His brother, a willing and very able participant with the bat, and an accomplished leg spin bowler.

The boys would spend hours honing their self- taught techniques, while Coop continued to mimic Glenn Mcgrath, and Mitch, Shane Warne, to the point where a number of Masters in his first year at Sydney Grammar, who did not know him by any other name than Warnie.  The boys would find any excuse to play in our back garden, the laneway, or the nets at the local school, wherever there was a space – the bat and ball would emerge. Coop was annoyed he was deemed too young for a team at six, but eventually burst onto the scene playing local club cricket aged eight.  This had given him two years to analyse and mimic the bowling style of his idol, and he embraced the challenge.

Coop’s first game caused one of the cricket tragic dads on the sidelines, whilst watching Coop deliver his first few balls, to remark…”I think we have just discovered our next McGrath”…  Possibly the highest order of compliment to Coop at the time.  Needless to say, after a succession coaches had moulded his style in later years, his likeness to his hero changed dramatically, but for a brief moment in time, he dared to dream.

Fast forward four years, and Cooper had been given the unexpected honour to captain the Scots College prep 1st X1.  His first fixture resulted in the revelation his idol had returned to the game, only this time as a school cricket dad. The ensuing nerves when he was around, proved to be problematic for Coop. Glenn would not have even noticed the uncharacteristically nervous young boy, as he treated all the boys in the same understated manner, and seemed to understand the impetus he had on each.

Last year, when Coop was struggling with the side effects and the endless disappointments attached to his treatment, he quite unexpectedly received an email from Cricket Australia, and attached were two videos, one from Glenn, and the other from Steve Waugh. Cooper had trialled at representative and state level with Steve’s son Austin who has gone on to become a force to be reckoned with as a national u19’s cricketer. I am certain neither dad would remember the gesture, nor had they remembered Coop, yet both had taken the time to record a special message for him, a message that would elicit joy at one of his lowest points. This gesture was completely unsolicited, and put simply, a very pure gesture by both, and one that brought a smile to Coop’s face when reasons to smiles were few and far between.

I have learned so much from my son over the past years – we all did.   We learned from his ever present humility and the grace during times of extreme adversity, and we learned from the way in which chose to help others by the inception of his Foundation, especially when his work would be unlikely to change his trajectory in any way. Cooper chose to use his currency wisely.  He chose to rise above the feelings of uncertainty, angst and fear, which went hand in hand with his cancer, and attempted instead, to make his very brief life count.  In doing so, he unwittingly began to once more, follow in the steps of his cricket idol.  Glenn and his equally impressive family, have used their currency wisely for many years, having risen above the grief, the adversity and the tough times, and have made the world a better place for those walking the path of the inspirational Jane Mcgrath.

As our family is left to contemplate life each day without our precious son and brother, together with the void his absence has left in our lives, it is always good to look at those, such as the Mcgrath family, and what they have managed to achieved for the greater good, rising above all else.

  Congratulations on your ten-year anniversary today. The team at CRBF are greatly inspired by your work, and your success.  We aspire to significantly improve the lives of young sarcoma patients over the next ten years, as you have done for those suffering from breast cancer.

 Photo courtesy of  The Telegraph