September is Childhood Cancer Awareness Month.
The Current situation at a glance.
Over 950 children and adolescents will be diagnosed with cancer each year in Australia.
One in five of these childhood cancers will be a sarcoma.
Each week, three children adolescents will die from cnacer.
Tow in five sarcoma patients will die from their disease. This increases if the cancer has spread upon diagnosis.
Childhood cancer survivors have a much higher risk of developing other malignancies later in life.
One in five sarcoma survivors will go on to develop a subsequent cancer or another sarcoma within ten years.
This month we shine the spotlight on the outstanding work of all cancer researchers, clinicians, dedicated nursing staff, treating hospitals and not for profits, whose focus is finding a cure through innovative clinical studies, improved standards of treatment and care, and funding research for childhood cancer.
It is also a time when we remember those children undergoing treatment, those yet to be diagnosed, and those who have tragically lost their lives to cancer in this country.
Sarcoma affects all ages, however it hits our young disproportionately hard.
As a dedicated sarcoma organisation, we wish to specifically highlight the outstanding work of Dr Emmy Fleuren, Senior Scientist, Zero Childhood Cancer Personalised Medicine Programme, Children’s Cancer Institute, whose research surrounding sarcoma specific high level tumour analysis stands to revolutionise the way we approach treatment for sarcoma in the future. Dr Fleuren joins her esteemed colleagues at the CCIA working tirelessly to advance a cure for all childhood cancers.
To hear more about Dr Fleuren’s remarkable Phosphoproteomics programme in our recent Let’s Talk About Sarcoma podcast series, click the link below.
We extend our heartfelt gratitude to all contributors working toward a cure for all childhood cancers.
Vale Professor Martin Tattersall
Today we mark the passing of a man so very special to many cancer patients over many decades. A man who would take all the time in the world to spend with his patients, allaying fears, providing hope and comfort, while engaging his special brand of patient interaction and profound kindness. Professor Martin Tattersall, or ‘Prof’ as he was known to many.
Following Prof’s time at Cambridge and the University College Hospital, he completed physician and research training at the Royal Postgraduate Medical School, The Institute of Cancer Research, and Harvard Medical School. Possibly what isn’t as commonly known, was his passion for rowing culminated in his participation and subsequent win in the prestigious Head of the River, representing Cambridge University.
Throughout his stellar career, he was Professor of Cancer Medicine at the University of Sydney from 1977, the youngest person to take this prestigious position at the age of 36, and a clinical academic at Royal Prince Alfred Hospital. His published works spoke for themselves, with over 600 academic peer reviewed articles, and 23,000 citations.
However Prof’s legacy lies with not only his relentless pursuit of a cure for cancer, but the personal interaction with his patients.
Cooper’s first meeting with Prof Tattersall could have gone either way. Coop was a headstrong, sport mad young man who had just turned 17, and Prof was in his 70’s, and a highly accomplished oncologist. As it turned out it was a match made in heaven. We understood Coop had the best of the best medically, however what we did not know at the time, is the man entrusted with Cooper’s treatment, was also renowned for the way he interacted with his patients.
The lynchpin as it turned out was Prof’s inherent love of rowing. He was not only a distinguished physician, but a passionate and very accomplished athlete. The two would share many stories over the 18 months spanning Cooper’s treatment.
Cooper and Prof forged a very close relationship, and that relationship became one of the driving forces for the inception of CRBF. Cooper could always rely on his team led by Prof, together with Keith Cox, OAM, and Dr Richard Boyle. His questions were relentless and the information they each provided was the only information we would refer to throughout the gruelling treatment regimes. It was no surprise the three comprised the first appointments to the CRBF Medical Advisory Board, together with recent member Professor Angela Hong.
Prof was also a champion of patient’s rights. He fought tirelessly to have Cooper included on a clinical study in which he felt the science demonstrated, showed enormous validity. At that stage Cooper had exhausted all mainstream options, with little hope. Despite the fact Prof was forced to swim against the tide with pushback from so many areas, including government agencies and treating hospitals, he managed to have the trial approved on compassionate grounds, which finally gave Cooper the hope he so needed. Sadly, due to the red tape involved, too much time lapsed and Cooper’s condition was too advanced by the time the trial had been approved. At times, this aspect of Prof’s work proved to be frustrating and heartbreaking. At his very essence, he was a deeply compassionate man who genuinely cared for his patients.
The world today is poorer for Professor Tattersall’s passing.
From all at CRBF, we extend our deepest condolences to Sue, Peter, Mark and Stephen, and their extended families for their devastating loss.
Georgie Katsanevkais. Redefining courage in the face of adversity…
At CRBF we have the privilege of working with remarkable individuals every day of the week.
A plethora of adjectives fall short of accurately describing the sarcoma patients we work for. Inspirational, remarkable, resilient, outstanding, courageous. Each of these words go some way toward describing those we know who are living with a sarcoma diagnosis.
Georgie Kats is one such young woman. This young Advertising Director’s story not only resonates deeply, it serves as a stark reminder when we face adversity in life, it is up to us as to the extent that adversity defines us. For Georgie, that choice was clear, it was to embrace the hand of cards she has been dealt. In her own words “I’m choosing to live a happy and fulfilled life. It may not be exactly how I imagined it to be. But I am happy and grateful to just be living each day. Perspective is a beautiful thing.”
I remember reading about Georgie. I reread the article (link below) over and over. I felt an overwhelming sense of sadness and angst – not from her words, but from what she has been forced to endure, at what arguably should have been one of the happiest times of her life. The family photos of Georgie, her husband Chris, and her precious daughter Antonia, resonated so deeply with me, as I expect they did with everyone who read this article.
Amidst the horror of a sarcoma diagnosis was a love story. The love between two young people, and the unconditional love for their newborn daughter.
An unremarkable bump on Georgie’s foot appeared toward the end of the pregnancy. Listening to sage advice from her mum, she did the right thing, and immediately brought it to the attention of her gynaecologist who felt it was nothing more than a cyst which could be addressed post pregnancy. The cyst however continued to grow, after the birth of Antonia, Georgie sought advice from her GP, who concurred it was most likely a cyst, and referred her to an orthopaedic specialist, who also felt the lump, which was now significant in size, was in fact a cyst.
It was not until the cyst began to interfere with Georgie’s favourite shoes, she decided to have it removed. It was once this procedure began, the clinician realised he was dealing with something sinister, and arranged a battery of tests and scans. A localized Myxoid Liposarcoma was diagnosed.
28 sessions of radiation began, followed by surgery, which resulted in partial limb amputation to enable life saving radical margins, and a very promising prognosis.
You couldn’t blame Georgie if she felt bitter, cheated, and disillusioned after a Myxoid Liposarcoma diagnosis was confirmed months after the birth of her first child, Antonia. For those of us who have been blessed with children, we all remember the euphoria of those magical months post birth. For Georgie, and her partner Chris however, it was bittersweet rollercoaster, as the challenges and reality of a sarcoma diagnosis were realised.
Georgie, and Chris have become the poster couple for positivity, and love conquering all.
Georgie has become a great advocate for our younger patients, sensibly educating others through social media, encouraging young people to take charge of their bodies –“ I want young adults to take control of their health. We have to grow up and learn to notice if something changes and doesn’t feel or look right. Educate yourself and be proactive with your health. Because at the end of the day none of us are invincible and we are never too young.”
The takeaways from this story are endless. Three separate clinican’s visits all with the same outcome. Georgie’s persistence arguably saved her life. She personifies the issues that are all too common. Sarcomas are rare cancers, they are sinister, and they are often misdiagnosed. Valuable time can often be wasted until the correct diagnosis is made. It is so very important to know your own body, and if a lump or bump appears without reason, and it does not go away, it needs to be checked by a physician.
If you are not happy with management of an unexplained lump or bump, it is your right to seek a second opinion. You are your own best advocate.
The final word in this article however, should be left to Georgie.
“When I lost my leg to cancer. I had no idea what to expect. As they were wheeling me into surgery in early May 2020, I just cried the whole way into the operating room. Even when they were putting me to sleep I remember tears were streaming down my cheeks. The sadness was overwhelming.
After the surgery was an adjustment. Especially during the first few days when I would forget I only had one foot and would fall straight on my behind. Then a week or so later I found myself smiling and I remember thinking to myself, you just got your leg chopped off why are you smiling. But then I thought. Why shouldn’t I smile? It’s a privilege to do so. It’s a privilege to still be alive.
I don’t know what my future holds. But I don’t feel disabled. I feel alive. I feel strong. I feel capable.“
We wish Georgie, Chris and Antonia all the wonderful things life has in store…
Follow Georgie on Instagram @Georgie_Kats
August of 2019 saw Swans rising star Nick Blakey shining a light on sarcoma in memory of Cooper, who was his team mate and, at times, his on-field adversary. Nick did this by attending a training session at the East Sydney Bulldogs home ground at Trumper Park, a ground that holds so many memories of Nick and Cooper fiercely contesting the AFL ball during their junior years. In Nick and Coop’s teams over the years were many other young keen players, including Jack Weinert and his younger brother Tom, who were overseen as coach by their Dad, former Sydney Swans Chairman & President Peter Weinert, a quiet and understated man who had volunteered his time to coach the boys.
Peter contacted CRBF after he saw the article published on Nick’s visit, writing the following: “By going to Trumper Oval when Nick did, it resulted in an article in the paper which may attract people such as me, who may like to contribute even in a very small way initially, to the incredibly important cause you are now involved in”. Peter also shared a precious photo from those Easts Bulldogs days, and in an unexpected twist was pictured standing side by side with Cooper in a team photo which included his son Jack, as it turns out, he was Cooper’s original coach at Trumper (pictured).
By means of background, Peter, when Chairman and one of the private owners of the Club, played a leading role in the survival of the Sydney Swans in Sydney. In 1992 he led the fight to save the Swans from extinction in Sydney, together with the great support of Mike Willlesee and Craig Kimberley after several years of on field turmoil and potential financial ruin. Along with Basil Sellers and John Gerahty, overseas based Owners also providing financial support, these five were inducted into the Swans Hall of Fame in 2015 under the Heritage Listing as “True Believers”.
In 1996, less than four years after the club faced extinction, the Sydney Swans played in their first AFL Grand Final under the then revitalised new Club administration, and Peter along with his co-Owners were permanently etched in Swans Club history. After eventually serving as the No. 1 Ticket Holder for 11 years Peter became a Patron of the Swans, and it is indeed fitting the Player’s Club Lounge at the SCG bears his name.
Through Peter’s understated generosity, together with Nick’s willingness to volunteer his time to memorialise his former team mate at Trumper Oval, Peter now holds the distinction of being our largest individual donor directly supporting clinical research into sarcoma.
It is difficult indeed to articulate our thanks to Nick and to Peter for their thoughtfulness, selflessness and generosity.
Chinese scientists publish promising findings on clinical trials involving Avasimibe, which has shown to inhibit tumour growth by targeting FoxM1-AKR1C1 in osteosarcoma
Those who know our family, know us as an AFL and rugby family, however those who truly knew Coop, also knew he was a passionate foundation supporter of the Melbourne Storm.
Cooper never wavered in his passion for the Storm, and loved nothing more than a spirited game of League – so long as his beloved Storm came out on top.
When the generous offer came from the NRL to host an intimate, invitation only Chairman’s dinner for 50 guests, it represented a superb opportunity to raise awareness and funding for sarcoma, whilst celebrating the game Cooper had come to love since he was a small boy.
After my first meeting at NRL HQ, I was simply in awe of the lengths all those I met, were willing to go to in order to assist CRBF in optimising this opportunity.
The can-do attitude filters from the top down at the NRL, and there is a culture which I found overwhelmingly refreshing. Each person I dealt with was truly accommodating, helpful and understanding. My requests were numerous, and I was never at any stage made to feel an annoyance, when each of these people were juggling the rigours of finals – their busiest and most intense time of the year.
Then there were the ‘Legends of League’. One can be forgiven for feeling a little apprehensive when dealing with an illustrious group of sportsmen, who represented some of the best players this sport has produced.
The absence of the often- present sense of entitlement which can accompany sportsmen of this stature, was a breath of fresh air. Wayne Pearce, Steve Roach, Steve Edge, Brad Fittler, Michael Ennis, Anthony Minichiello, Braith Anasta, and Daly Cherry-Evans dined and engaged with our guests, in an effortless manner. Each volunteered their time, and their highly entertaining stories, and in doing so, thoroughly endeared themselves to those who spent time with them. I suspect I will continue to field emails from our high profile corporate attendees for some time, extending their thanks to each of these legends of the game of rugby league.
It is of note, the media has been littered with less than flattering commentary and images relating to Rugby League over past months, and it is nigh on impossible to find a newspaper article, or television coverage, that does not focus on the negative. As such, it is disappointing to note the media was unable to cover this event, and to broadcast the infinite positives rugby league brings to the community as a whole. This event was but one shining example of eight outstanding legends of the sport, quietly, and without fanfare, willingly giving their time to raise money for a cancer that has by and large been forgotten, and statistically, is unlikely to ever affect them or their families. There was no hidden agenda, but instead a willingness to place their ‘celebrity’ behind the cause.
Thanks to the generosity of the NRL and these outstanding legends of the game, we are today $33,000 closer to finding a cure for sarcoma,(and climbing daily), and in doing so, the sport of rugby league has provided untold hope for those young patients who walk this road behind Cooper.
Your kindness, and your willingness to shine the light on sarcoma will never be forgotten…
A very excited Coop jumped in the car after the school sports carnival in July of 2014, announcing he had found the next Sydney Swans first grade player.
Coop had for some time been studying the form from afar, of this new SGS student who hailed from Cranbrook, and had noticed he was skilful, dedicated, lightning fast, and according to Coop, he had just the right balance of ‘mongrel’ and passion. Needless to say – he liked what he saw.
We were intrigued as it was rare for Coop to comment on others – he liked to back himself, and always did so. At a school where AFL was not an option for sport, it was even more rare to find those boys who did play the game at club level, and whilst there was a depth of AFL talent, this young man had obviously stood out from the rest.
The two formed a special bond, forged by the commonality of AFL, and then playing in the school cricket side together. They shared a love of sport, and a wicked sense of humour, often at the expense of others – but never spiteful. Some of my most fond memories of the boys were during cricket lunches where there was a look of pure joy on Coop’s face whilst devouring ‘Charcoal Charlies’, and strategising about removing the opposing side.
Lachie was not only a talent on the AFL field, but also proved to be a formidable opponent on the cricket field. At one point, he and Coop opened the bowling for SGS, and they relished every moment.
When Coop was diagnosed with osteosarcoma, it was Lachie and his beautiful family who were the first to put their hands up for anything and everything, and to this day, nothing has changed. Carolyn, Simon, Lachie, Ned and Ella provide our family with love and support, and never waver.
Cooper loved the fact ‘ Swaney ‘was then shorter than him, and enjoyed letting him know, he needed to grow if he was going to be serious about his AFL. This was his way of letting Swaney know he backed him. Swaney took the advice and grew…almost as tall as Coop – but thankfully he knew better than to overtake him.
Lachie was one of the few friends Coop would allow to see his condition deteriorate – a testament to their friendship, and the trust Coop held for his friend. At 16, Lachie showed immense courage in visiting and supporting Coop during some of his darkest moments – sometimes Coop was so weak Lachie would be forced to leave after a short time, but this never phased him. Suffice to say most adults would have found this process excruciatingly difficult – but Lachie took it in his stride, and provided untold comfort to Coop’s troubled mind throughout his swift deterioration.
On September 3rd, Lachie ably assisted his team at the East Sydney Bulldogs to a premiership, and as always, took a starring role in doing so. It is of note, this was only two days after we farewelled Coop in the hallow surrounds of the John Vallance Hall, on September 1, 20187.
As you may imagine, it was an easy decision to ask Lachie to join us as Ambassador at CRBF in honour of his friend who treasured their time together. We know that Coop would have loved to have seen how Lachie’s career is taking off, but it would come as no surprise. He always knew it would.
There is no doubt there will be an ever-present voice during every game Lachie plays, during what will no doubt be a stellar AFL career. It will be telling him what he is doing wrong, and how he can do it better – and reminding him he will NEVER grow to 189.5cm…
On Friday 10th August, 200 passionate classical musical lovers came together, and with the exception of rapturous applause, you could hear a pin drop. From the moment pianist Rob Hao emerged from the wings, to be seated at the grand piano to begin his recital, the audience were spellbound.
Rob’s recital, superbly set in the commanding presence of Big School Hall, at Sydney Grammar School, delighted all those who were fortunate to have secured a seat, and were transported to another place, whilst listening to late Chopin works, Bach and Alban Berg, together with an early Beethoven sonata to complete the flawless performance.
The Cooper Rice-Brading Foundation, and in particular the Rice-Brading family, wish Rob every success during his time in the UK, where he will commence an undergraduate Bachelor of Music course, majoring in piano performance, at the Royal College of Music in London.
There is absolutely no doubt how bright the future is for this accomplished young man, who is not only a talented musician, but the loveliest young man you could ever hope to meet.