Extending our gratitude to the ‘Legends of League’…

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 legend on and off the field…

Paul Roos is a former Australian Rules footballer and senior coach, who played for both Fitzroy and Sydney during the 1980s and 1990s respectively.

As a player, Paul was rated as ‘The best footballer in Australia’ (Holmesby & Main, 2011) and was named at centre half back in Fitzroy’s Team of the Century.

Paul was inducted into the Australian Football Hall of Fame in 2005, and was named in the prestigious All Australian  team seven times.

After his days as a player were over, Paul went on to become a highly successful coach, guiding the Sydney Swans to the 2005 premiership, their first in 72 seasons.  In 2013, Paul commenced his coaching tenure with the Melbourne Football Club and has been attributed with overseeing the Demon’s return to their glory days of the 60’s, culminating in their first finals appearance in twelve years this weekend.

Post AFL, Paul forged a highly successful career in the media together with his immense popularity on the public speaking circuit, represented by agent Nick Fordham from the Fordham Company.

For those who know him, Paul’s sporting prowess and media career, are but one part of the story.  Paul has always used his currency wisely. We remember fondly how often he would spend time with the kids at the school his boys attended in Sydney’s eastern suburbs, shooting hoops, playing handball, or simply stopping to chat to a myriad of young fans, many mornings at school drop off.  He always had time for the kids and more often than not, the odd star struck parent, all the while blissfully unaware of the effect he was having on those on the receiving end of his kindness.  He always made time for  those around him, despite his rigorous coaching schedule.

Paul spent many years, and countless hours of his time volunteering as a coach at Easts Bulldogs junior AFL club, changing the lives of the kids who dared to dream. His incredible sense of humour, candour and no nonsense approach endeared him to those he coached and their parents alike.  Further to this, throughout his illustrious football career at both the Fitzroy and Sydney Football clubs, he would hear of  families who had lost precious loved ones or fans  who were in need of light during the very dark passages of their lives, reaching out to them in an effort to make a difference, and remaining connected many years later.  These understated and highly meaningful gestures were never for the cameras.

In 2008, Paul was named ‘Father of the year ‘ in recognition of his ability to balance the needs of his family with the responsibilities of managing a high-profile sports team.  This was unsurprising to those who knew him, and understood his family was, and remains, the centre of his world.

The Roos family have been united as a team, for as long as we have known them, each doing their bit to make the lives of others so much better.  Their love and support of Cooper throughout his treatment and beyond, is something we will never forget, and will be etched in our hearts and our memories forever.

Paul joining us as an Ambassador for the Foundation that proudly bears Cooper’s name, is representative of ‘Team Roos’.

Paul, we thank you and ‘Team Roos’ for all you have done, and all you do for the Foundation.  Be assured your ‘little mate’ who incidentally did grow as tall as you, would be so proud to have you, and your family, lend your name to a cause he held so close to his heart.

Goodbyes hurt the most when the story is not yet finished and the book has been closed forever…

I have been asked each day, sometimes many times a day over the past year by those close to me – How I am?  How I am doing? …I admit to having little to no idea.

Losing Coop has left me devoid of any ability to self-assess.  In fact, Cooper’s passing has stripped me bare of emotion as I once knew it.  Each day is simply survival, and with it, a thinly veiled attempt at making every day count as Coop always did, despite the appalling hand of cards dealt to him.  I never lose sight of the blessing I have in Mitch and Colin, who are the only ones that truly understand the depth of this pain, that rarely eases, and never leaves.

Cooper’s passing took our breath away.  There are days one year on, where we still feel it is nigh on impossible to breath, and panic attacks are common.  It is that moment that can strike anywhere, usually prompted by complete unpredictability, where the gravity of this situation will, without notice, hit hard.

The only means I have been able to find to articulate how each of us feels daily, is for those who are parents, to picture that brief but unplanned separation from your child in a department store, in the street, or indeed in any populated and public place.  Your child leaves your side, in that blink of an eye when you looked just the second before, and they were there.

We can each identify with that swift feeling of all consuming terror.  The nagging pit in our stomachs.  The unfiltered fear. The heart that beats out of your chest.  The pure angst which brings with it an inability to breathe, and the cold sweat – until your child is finally back by your side, and you allow yourself to slowly breath again…The feeling of sheer and utter relief you feel cannot be articulated nor replicated.

From the moment I open my eyes each morning, there is a split second where life is perfect again, and Coop is asleep in another room of the house – the way it was always meant to be.   Then reality sets in, and the terror and angst of twelve gut-wrenching months of separation is ever present, until relief finally comes in the form of sleep, and the pain is once again gone – albeit temporarily.

I became a different person when August of 2018 came around – counting each day, as the 24th drew closer.  Each day represented a day closer to the day we lost our precious son and brother, and each was associated with its own bitter sweet memories of the last two Augusts, since the nightmare began.

Each day I wonder what I missed, or I what could have done better.  I ask myself why I could not find the answers.  Parents are fixers.  They fix the problems in their children’s lives.  When the stark reality hits and you cannot fix a dire situation despite your best efforts, the helplessness and complete loss of control is palpable and debilitating, and you live with the guilt on a daily basis thereafter.

People often speak of turning back time in an effort to make each moment count.  Thankfully, we did just that – we lived in the moment, led by the courageous and fearless young man who bore so much pain throughout his brief life, and despite this, fought hard to leave his mark.  The problem is, it is never enough – no-one never wants the moment to end. No-one ever expects it will.  When you are the parent of a gravely ill child, you live with hope, and you never give up. Giving in is not an option.

This form of grief is similar to living two lives – one is where you publicly pretend you are doing well, and the other is where your heart silently screams out in pain.

We have been blessed with wonderful friends and family, as many who walk this road do so alone.  Random acts of kindness from those we have never met, have melted our hearts along the way.

Conversely this journey can be a sad revelation of the strength of true friendship, and it is fair to say there have been some insurmountable disappointments along the way, but very, very few.  It is a sad reflection that even in the depths of despair, people will form ill- conceived judgments about your journey, and how you deal with what comes your way.  You find yourself feeling sorry for those who do this, and often wonder how they would cope given the same hand of cards.

Cooper used the analogy of a train full of passengers pulling out from the station, and by the time it arrives at its final destination, a number of passengers have disembarked – this is the way he saw his treatment, and his declining health, with regards to those close to him.  He knew unequivocally, who his real friends were, and he ensured we knew also.  These friends were by Cooper’s side throughout, and there until the end of his journey.

To those people who have wrapped their arms around our family from afar, and walked this road with us, we are humbled, and will never be able to adequately and properly thank you for your love, thoughtfulness and kindness, the absence of judgment, and the endless support you have provided.  We are truly blessed for your presence in our lives, and each of you knows without doubt, who you are. If I could, I would name each of you individually, but it would take me days, if not weeks to do so.

With the next twelve months looming, we will continue to place one foot in front of the other, all the while, attempting to each day place our best foot forward.  We will make mistakes, we will often be difficult to read, we will sometimes withdraw, we will forget things – often birthdays, but we will never for a moment forget the love and support we have received over the past year, and how blessed we were to have Cooper in our lives, albeit so briefly.

The absence of Cooper’s larger than life presence, his courage, and the very essence of who he was, has created an enormous void for those who loved him so very much.  It is a void that can never be filled.  Our hearts remain broken, as we are forced to once more contemplate life without him.

Cooper will live on in our hearts, and in all we do in his name, for eternity…

The definition of a true friend to the end…

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…

Thank you Rob Hao!

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.

Amazing people doing amazing things….

Heide Middleton and Sarah Jane Clarke are not only the founders of the highly successful Australian fashion label Sass and Bide, they have also lent their highly credible names to improving survival outcomes for sarcoma patients, with their fundraising and awareness initiatives.

It was while Heidi Middleton was staging her own battle with breast cancer, that her friend Kate Boyson was also staging a valiant battle with a Ewings Sarcoma diagnosis. Ewings Sarcoma is a highly aggressive and rare form of primary bone cancer.

Kate passed away in October of 2007, five months after her diagnosis, leaving behind her husband Marcus who now chairs Rainbows for Kate, the Foundation that proudly her name.  Kate and Marcus also had two young children.  Heidi was understandably devastated by the tragic and unnecessary loss of her friend at the age of 32.

Sass and Bide presented a tribute to Kate at New York Fashion Week, 2008, titled ‘Rainbows for Kate’ . This collection was inspired by a bracelet Heidi made for Kate, which contained coloured beads representative of different emotions, which today forms the basis of the Foundation logo. When addressing those at the Sass and Bide show, Heidi’s poignant words remain a strong reminder of all the qualities she admired and missed in her beautiful friend Kate Boyson.

My beautiful friend, tonight we celebrate your incredible spirit… your unbelievable courage, your shining heart…your ‘light any room’ smile…you burst into my life like a beautiful rainbow…” 

This story is a powerful reminder that sarcoma, like most cancer, does not discriminate.  It can affect all ages, despite disproportionately affecting young people.  Kate’s story, put simply, is heartbreaking.

Kate’s story also serves to remind us of the strength of the human spirit.  Her husband Marcus, their children, and her dear friend Heidi Middleton, all worked through their  unspeakable grief, to help spare others from traveling the same road.

The highly successful Rainbows For Kate, (RFK) funds ‘critical research that will bring hope, time and more treatment options to those diagnosed with Sarcoma cancers.’

RFK has contributed more than a million dollars to sarcoma research, and last Saturday night marked their ten -year milestone at The Swifts, Darling Point.  We are in awe of what this Foundation has achieved over a decade, for sarcoma research, and ‘grass roots’ awareness, and their outstanding resilience.

Please go to the website www.rainbowsforkate.com.au to donate or press the link below

 

http://www.rainbowsforkate.com.au/donations.html

How do we ever find the words to thank you?

Walkley Award winning ABC journalist and producer, Lesley Robinson has worked in current affairs for more than fifteen years, working for the ABC Foreign Correspondent, ABC News and Australia Television, before joining the 7.30 Report.  This year Lesley put yet another jewel in the crown at the ABC by adding her highly successful style of journalism to the Four Corners team.

Lesley lovingly and respectfully produced Cooper’s story which was aired on the 7.30 Report on January 15 this year, and had spent an enormous amount of time with him filming him for the proposed story.  Cooper had so much time for Lesley.  He saw her as a serious journalist, and one who could reliably portray the perils of a sarcoma patient, but he also saw her as a very genuine and kind woman, and a devoted mother – someone he could trust.  Coop was happy to have Lesley and her crew to film him doing what he loved over a period of many months.

Lesley became very close to Coop, and understood him well.  He in return, forged a strong bond with her, and allowed her to see the raw reality behind the diagnosis, something he did not do with many.  Lesley became very special to Coop and to our family over the months prior to his passing, and afterwards.

Three weeks ago, I was alerted by a third party, to the distressing fact, the precious, and largely unseen footage of Cooper had gone missing.

This footage bore the closing months of Cooper’s life, at a time when he was still happy, upbeat, and hell-bent on conquering his condition.  We were not yet to the point where our family were able to watch this footage, however we were comforted by the fact the ABC had made the decision to give it to us, when they were under no legal obligation to do so.

After the year that has been for our family, this was indeed the final straw.  The past three weeks have been simply heart breaking, as we exhausted all avenues in an attempt to locate these files, and in doing so, being met by obstacle after obstacle. It did feel at times like the most bitter of blows after losing Coop.  There were days where it felt very hard to breath as we contemplated the extent and gravity of this situation.

As Coop declined, we would never allow any cameras, ours or others, around him.  He despised his decline, and it was not something that we felt, should ever be captured.  The footage taken just weeks prior to this however, showed a very different young man, facing his challenges in the same fashion as he had for eighteen long months.

Last night, out of sheer desperation, I contacted Lesley, who I had not wanted to bother with this issue.  As a producer, Lesley is not expected to keep rushes (raw footage) whilst filming a story, so I felt it may cause her angst to be made aware of the situation.  She responded in a very timely manner to tell me she felt there may be hope, as she often keeps copies of ‘important or precious’ footage.  At 6.53 last night I received a message from Lesley saying she had the files.

There are simply no words that can express the extent and depth of our gratitude to Lesley.

Suffice to say we will never be able to adequately thank her for returning these precious memories to us…

 

 

Truly beautiful inside and out…

Mama Cax (Cacsmy Brutus) is a Haitian born model , advocate, blogger and motivational speaker, based in New York who holds a BA and and MA in international studies.  At 28 these achievements alone are impressive by anyone’s standards, and her life at first glance, seems to be complete.

But it is not just her stellar professional career that sees this stunning young woman stand apart from others, Cax as she likes to be called, has faced unimaginable adversity in her 28 years. Diagnosed with osteosarcoma which had metastasised to her lungs, and at the tender age of 14, the fight of her life began.

Cax early life was near perfect, in the idealic surrounds of her home in Haiti. Then in a blink of an eye, this all changed when constant pain in her hip was, after many visits to her doctor, finally diagnosed as osteosarcoma. Like most sarcoma patients, the diagnosis simply marked the beginning of a journey that most people would struggle to comprehend.

An intensive neoadjuvant chemotherapy protocol for twelve months was followed by an invasive twelve hour hip replacement to remove the tumour from the bone, together with a metal implant, which Cax’ body rejected, proved to be unsuccessful. The result was an amputation of her right leg, together with half of her pelvic bone. Keeping in mind all along Cax was the tender age of 16. When I was 16 the biggest issue I faced was what to wear, or how to avoid homework, and I am sure I am not alone.

The toll was indescribable and understandably, severe body image issues began to manifest, as the standard prosthesis that was fitted did not look real, and the reality of the magnitude of surgery set in. This is something rarely considered by those on the outside looking in. If you have your life, then to the outside world – you are deemed one of the fortunate ones. For those living this nightmare, it is yet another bitter blow.

Cax sourced an online community who identified with her concerns, she found Alleles, a company who made “fashionable, beautiful prosthetic covers”, and the shift in her self confidence began. During this time, Cax began her now highly successful Instagram account ‘Mama Cax’ which currently has 141,000 followers, to share her journey of ‘self love’.

By living by her mantra, she was able to “encourage others to feel less insecure and more empowered in theirs.” Adding, “I no longer feel disgusted looking at my scars. I now see them for what they are: proof that I survived, that I’m still here, and against all odds, won a vicious battle with cancer, and that’s nothing to be ashamed of.”

Cax, through sheer courage, determination and resolve, has turned the unthinkable, into a vehicle in which she guides and inspires others that walk behind her. She is a highly successful blogger, who is a disability advocate who has earned the right through her experience, to speak about positive body image.

For those of us who have lived this nightmare that is sarcoma, either as a patient or the loved one of a patient, we thank this inspiring, beautiful young woman for all she has done and is doing for those without a voice.

Biosceptre’s Phase 1 Clinical Trial for anti-cancer vaccine BIL06v approved by Ethics Committee

On the 21st of February Biosceptre’s proposed Phase I clinical trial for BIL06v (anti-cancer vaccine) was granted conditional approval by the Bellberry Ethics committee. Biosceptre is now proceeding to take BIL06v into a Phase I trial in late Q2 or early Q3 2018.

Biosceptre has high confidence in the safety of BIL06v, in part as a result of pre-clinical studies and compassionate access patients treated in Australia under the TGA’s Special Access Scheme.

The planned clinical trial will recruit between 20 and 30 patients from a basket of late stage cancers and seeks to confirm safety, tolerability and immunogenicity of BIL06v.  The planned clinical trial will also seek to identify early indications of efficacy in humans.

CEO Gavin Currie said “Having recently closed entry to our Series A fund raising round, we are pleased that this fully funded clinical trial, building on significant preclinical data, has been conditionally approved.  We consider that a successful clinical trial, our first for a systemic therapeutic product targeting nfP2X7, will provide further validation of nfP2X7. We are hopeful for first patient recruitment in Q2 2018.”

 

Read more about the very promising developments regarding the BIL06v anti-cancer vaccine and nfP2X.

http://www.biosceptre.com/technology/

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