Saving the best until last…

Friends were so very important to Cooper. They were the very essence of who he was. This was never more evident than throughout his valiant battle with osteosarcoma.

Cooper was never comfortable with his friends seeing him unwell, he did not want to make them uneasy or scare them unnecessarily, so rarely did he allow them to join him at the hospital. Instead he would save their get togethers for when he was discharged, and they could have some fun together, without the stark reminders of that dark cloud that followed him throughout his illness.

Coops friends represented normalcy. They were his escape back in time when things were so much simpler, and they never let him down.

This group of friends who manifest from The Scots College, and Sydney Grammar School provided Cooper with a lifeline during the really difficult times. They were always up for a game of footy at the park or have a hit of cricket on the good days, and on the bad days, they would be the first to rally around him, whether that was a visit to do not very much at all but to let him know they cared, or something equally as simple as a Facebook message or SMS when he was confined to bed, which never failed to lift his spirits.

We never underestimate the pain these wonderful young men must feel on occasion, since Cooper is no longer in their lives, and yet each of them in their own way, has continued to support our family and the Foundation that bears Coops name, and we are so grateful to each of them for doing so. This road we travel is unchartered territory, and we must never take anything for granted, so to maintain contact with each of these young men who were so important to Coop, is more than we could have ever hoped for.

We are so very proud to announce these outstanding young men as Ambassadors for the Cooper Rice-Brading Foundation, and can only imagine how proud Cooper would have been of this very important and significant development.

To Gus, Warwick, Joe, Max, Xavier, George, Alexander, Matthew, Adam, Lachie and Sam -words cannot express our gratitude to each of you for the wonderful memories you provided Coop and our family over the years, and the joy you brought to his very brief life.

We are honoured to have each of you join the Foundation to play such an important role in ensuring Cooper’s legacy lives on.

Max Bonic

When I moved to Sydney for the start of year 6, Cooper, also new to the school, was a massive influence in making that transition seamless. It was Cooper and his family who took my brother and me to watch an AFL game for the first time, a sport I had never seen before and it was Cooper who later encouraged me to give the sport a try for myself. It was from these foundations that our friendship was built.

Learning about Cooper’s diagnosis was obviously a shock and a very sad moment, but it wasn’t something I understood the realities of very well. My initial mindset was always one of optimism, that this would be a great challenge but one Cooper would come away from. I think this was largely the attitude Cooper adopted as well. One of the things I most admired about Cooper was his resilience and refusal to ever complain. He much preferred to keep himself busy and enjoy spending time with his mates than feel sorry for himself, which is something that definitely rubbed off on the people close to him.

When Tania asked if I would be interested in being an ambassador for the foundation, it was an easy decision. The work that the foundation has done so far in raising awareness and funding research into Sarcoma is astonishing. Cooper gave me so much through my friendship with him, so I leapt at the chance to help in any way I could. I am immensely proud to represent to foundation and I hope we can continue the great work that has already been done.

Max Bonic

Joe Bonic

As the only other new student in my class when I first moved to Australia as a 10 year-old, Cooper was the first friend I made. This friendship was hardened on the sporting field, a place where Cooper, myself, and all our friends were happiest. This never changed, and, as it was when we started high school, we neared the finish by spending our time throwing the footy around at the park.

Cooper was persistent during our last year together. Even when the treatment and the cancer did their worst to his body, his sense of humour and his spirit were as strong as ever. No matter how low I’m sure he felt, he would never let on to his friends for fear that we would treat him any differently to how we always had.

I had never heard of Sarcoma when Cooper was diagnosed, and that’s a crying shame because I know that it means that so many others will also have never heard of it until it affects someone they love. That’s why the awareness and research that Cooper and the Foundation are helping is so important, and to support that in any way is a real honour. The work that Tania, Colin, Mitch and everyone involved in the Foundation has done is fantastic, and I can’t wait to see the wonderful work that can be done in the future.

Sam Isherwood

Sam Isherwood

Matt Jones

Matt Jones

I first met Cooper when he joined Scots and instantly became extremely good friends. We shared a passion for sport wether it was playing it, watching it or discussing it.

I played with and against Coops in multiple sports Cricket, Rugby and Aussie Rules to name a few, he was such an exceptional athlete which meant it was a lot better to play with him rather than against him. When ever I was around cooper I could guarantee that I could have an uncontrollable laughing fit, he was the funniest person I’ve ever met and that never changed.

When Cooper moved to grammar I was fearful that our friendship would grow distant but thankfully it never did. When Cooper got sick he never complained not once, he was so inspirational the whole way through and showed endless amounts of courage and perseverance. Coops really is a role model, he is an inspiration to me and I am sure to everyone around him.

I am very proud to be an Ambassador for Cooper because he was such a good person and a good friend.

Lachie Kiel

Lachie Kiel

Alexander Magiros

Alexander Magiros

Cooper was one of my closest mates at SGS. It feels like not long ago that we were messing about in our year 10 humanities class.
My fondest memory was kicking around an AFL ball on Birchgrove oval only to be pleasantly interrupted by Tania making sure that we had been well fed.
Throughout Coops’ first year of treatment, he lived as if nothing had changed. He remained the humorous,
enthusiastic and outgoing person that I know. Although he never spoke of his suffering or his Foundation, the work he had put into it was indescribable. His courage in the face of adversity is what was most inspiring.
I am proud to be an ambassador in honour of Cooper’s legacy which he worked so tirelessly to establish.
It is so important to educate our society of such a rare cancer as doctors at Lifehouse are seeing 3-4 new cases a week. I’m eager to help the Foundation progress in any way that I can.
Alexander Magiros
Gus McGrath

Gus McGrath

My mate Cooper has had a big influence on my life. I want to keep it this way, forever.

We played sport which we both loved, mainly cricket and footy, we laughed, we played Poker, and we had fun. Coop never left our Scots group and even in his years and time at Grammar we stayed best mates.

When Coop got sick he never complained.  At first, I didn’t understand what was happening and Coop didn’t want to explain it. I respected that.

My Dad had been sick with Leukaemia when I was young so I knew that Cancer would change things. It didn’t change Cooper. He wanted to be part of everything as it had always been. So we played cricket, we played footy, we played cards, and I sat with him in the hospital when he was having treatment or recovering from it.

Coop was so brave. I wanted to tell him all the time because he was trying so hard to be normal and I wanted to help him. Sometimes in the silent moments nothing needed to be said, only that I would stand by him whatever it took.

When Tania asked if I would be an Ambassador for Cooper, I didn’t really understand what that would mean or what I can add. However, if I can honour Coops courage, his determination, and represent him when asked, I would do my best. Coop is not a memory for me, he is here every day and always will be.

Gus McGrath, September 2018.

Adam Pacey

Adam Pacey

My relationship with Cooper began in our first year of school at Sydney Grammar. Sharing a liking of sport, our friendship soon blossomed in the coming years.

Our friendship was forged in our early years of high school which involved an endless pursuit of evading all school work and figuring out ways to avoid our next detention or homework submission.

But it was when he was presented with his life changing diagnosis that Cooper’s great character became even more apparent. A memory that I treasure was when Coops returned to cricket at Weigall against St Joseph’s College. After months of chemo and an intensive surgery, Cooper managed to train and play cricket at 1stXI standard. Cooper was unlike any person I’ve ever known. In the face of immense hardship, he always remained true to his character and maintained his sense of humour.

I am proud to be an ambassador for the Cooper Rice Brading Foundation, a cause that one of my best mates worked tirelessly to promote at the hardest point of his life, in the hope to save further lives.

Xavier Roche

Xavier Roche

My lasting memories of the friendship I shared with Cooper are of his unique sense of humour, our shared love of sport and competition and the courage he displayed throughout his illness. His personality and strength of character remain influential in my life and are never far from my thoughts.

The enduring impact of Cooper’s life on his friends remains immediately apparent in our Scots friendship group, through both consistent references to hilarious and unforgettable moments we had with Cooper and the decisions and actions each of us make, for which Cooper’s bravery and determination will always provide guidance.

In my 18 years I have known several family members and friends, in addition to Cooper, who have been diagnosed with cancer. Whilst the therapies they have undergone have often been brutal and challenging, thankfully with research and funding there are increasingly successful treatment protocols for many cancers and I have been able to see these family members and friends recover and thrive.

At the time of Cooper’s diagnosis I assumed that this would be the case for him too. I did not realise the aggressive nature of Sarcoma, nor the limited options for successful treatment and survival.

It is with this in mind that I am eager to be involved with the Foundation to assist in any way I can with lobbying for funding and research into Sarcoma.

Xavier Roche

 

 

Warwick Ward

Warwick Ward

“My earliest memories of Cooper are from Year 6 at the Scot’s College. With a mutual passion for sport and an identical sense of humour, we were destined to become really good mates. Funnily enough, it wasn’t until he had left Scots and moved to Grammar that we became so close.

Cooper’s cancer diagnosis was a really confronting experience. One of my biggest concerns was whether Cooper would be able to continue playing sport because he loved it so much. However, Cooper didn’t let his condition stop him, he continued to persevere, insisting he was the best sportsman despite playing one handed. Cooper’s sporting efforts are a testament to his perseverance and resilience.

Cooper rarely discussed his cancer because he didn’t want it to impact those around him. He was so brave and selfless, a true role model. No matter how tough things seemed to be I always believed he was going to be okay because he was so positive and motivated.

I am very proud to be an Ambassador for Cooper because I want others to be inspired by his perseverance and courage, just like I am. While I’m not too sure what being an ambassador entails, I feel very safe in Tania’s hands.”

George Foley

George Foley

My friendship with Cooper was one of real mateship.

Sharing a love for sport, we would waste hours endlessly arguing over things like whether Buddy was a good signing for the swans, is Smith or Slater better in their prime, and where the Aussie cricket teams inconsistency comes from.

A natural connection came and we clicked from the early years of high school. Always laughing and smiling, our friendship meant more to myself than Cooper ever knew.

Getting involved with CRBF seemed a no brainer to me once Coops told me about it. I’ve been lucky enough to be involved with the foundation, beginning with the year 12 trivia night fundraiser in early 2017.

I look forward to continuing my ongoing support of the CRBF and becoming more involved in the Foundation’s fantastic efforts to beat Sarcoma as an ambassador.

A tribute to Kyle Zandona in the words of his sister Tayla

When Cooper passed away, I opened my email shortly after to find a heart-wrenching email from the younger sister of a patient who had lost his valiant battle with sarcoma. Her name was Tayla Zandona, and her words resonated with me deeply, and could have only come from someone who had lived the unspeakable devastation of sarcoma.

Tayla had lost her much- loved older brother Kyle to sarcoma at the age of 25, at a time when he had his whole life ahead of him. Every day she relives that pain, yet this extraordinary young woman still found the capacity to reach out to our family and to register her support.

Fast forward to a month ago, when Tayla and her equally lovely partner Damon came to visit us in Sydney, and it felt like we had known each other for longer. Certainly for my husband and I, there was an instant bond. The friendship was formed through the commonality of sarcoma, and yet I felt there was so much more – strong family values, a country upbringing, and the determination to succeed no matter what, which I saw so much of in Cooper.

I was delighted and somewhat surprised when I realised some weeks later, this remarkable young lady, was intent on fundraising for CRBF. This was never expected, and a very big part of me felt considerably uncomfortable with the notion, as I did not want our friendship to be based on what Tayla should or could do for the Foundation.

Nevertheless, she forged on and literally weeks after we met, on Saturday December 1, she and her amazing cohort of friends, contacts, and supporters in the Griffith region, raised $4300 for clinical research into sarcoma. This was done by a joint initiative between F45 Training in Griffith, and their trainer Andy Gamble, and the Yenda Diggers who hosted a summer session barbecue lunch with Hidden Temple providing the entertainment. Tayla also arranged a raffle, with all prizes generously donated by businesses in Griffith and Yenda.

Words really do elude me, when I am faced with an example of such pure generosity of spirit. Tayla could be forgiven for simply not wanting to look back, after what she has been through, and yet she is so driven to make a difference in the lives of sarcoma patients, by raising funds for clinical research.

I have not yet had the pleasure of meeting Tayla’s family, however judging by the wonderful young woman she is, one can only imagine, they must be extraordinary.

Tayla, words really cannot express our gratitude to you for our kindness, and thoughtfulness, especially given the hand of cards you have been dealt. It goes without saying – you set the bar very high for all of us.

Your precious brother Kyle would be justifiably proud of your courage and determination, and the difference you are making in the lives of young sarcoma patients everywhere.

Tayla’s deeply touching tribute to her brother Kyle, written in her own words, appears below.

Kyle’s story starts in August 2009, returning home a little sore from a weekend trip to the snow. For only a couple of tumbles while skiing the pain was not subsiding almost a week later. All of that was put on hold when we got the devastating news that Kyles best friend had passed away. He took it upon himself to look after everyone else thinking it was only a pulled muscle. Until Kyle could no longer hide the pain as he started limping and his thigh started to swell. It was then we decided it was not a normal muscle tear despite what one of the local doctors were saying and treating it as.

Four months later on the 16th December 2009, Kyle found himself sitting in Sydney doctor’s consulting room being told at the age of 18 years that he had a tumour the size of a deflated football growing on his right femur, Osteosarcoma.

His treatment began Christmas Eve 2009 three rounds of chemo, major leg surgery that followed in February 2010, doctors had planned to remove right femur, radiate it, then to return it back. Two days prior to surgery there was a change in plans as doctors had revealed that chemo had not worked as well as we all hoped. They then decided to replace 70 percent of his leg with a titanium prophesises (just below the hip to below the knee). After surgery another three rounds were planned until the second sent him into renal failure and he was left fighting for his life.

18 months later October 2012 a PET scan revealed our worst nightmare, it had returned in his left lung which doctors immediately removed, which lead to an extremely painful recovery, Agony with every breath he took. Five months later March 2013, another lung surgery as it has return again in his right lung this time. Three months later June 2013 with chemo to commence again in July an inpatient for three weeks straight.

August 2014 another lung surgery but this time the cancer had attached itself to two ribs which doctors had to remove and rebuild his diaphragm. April 2015 another surgery. June again for his 5th lung surgery another two ribs were taken and more diaphragm rebuilt. August 2016 it had returned again protruding and growing at a rapid pace. Doctors then tried chemo injections. October 2016 more chemo then returned home.

December 25th 2016 at the age of 25 Kyles seven year battle came to an end.

Even though osteosarcoma took up a large part of Kyle’s life, he never let it define him. As soon as you stepped off the hospital grounds you were forbidden to speak of it, “what happens in hospital stays in hospital”. He wouldn’t simply just walk out of hospital it would be a sprint even though doctors had said he “would never be able to run again”.

The man we remember was an old soul with a heart of gold, the definition of brave, courageous and selfless, a country boy. The only thing he wanted was to follow his father’s footsteps and take over the family farm. He showed this at the age of 18 months old, he would climb out of his cot, pull a chair to the door to unlock it, head out onto the farm at 3am in his little bananas in pyjamas gumboots, a nappy and a singlet ready to help with the harvest.
At the age of nine he was driving the tractors begging mum and dad to stay home from school so he could help as there wasn’t anything important happening at school. Two weeks after major leg surgery you would most likely find yourself resting and doing your exercises. Not Kyle, he somehow he had snuck out of the house for us to find him climbing up backwards into the tractor because he just wanted to go for a drive.

If you couldn’t find Kyle out on the farm you would find him with his mates creating “engineering master pieces” as he would say. Until dad got the phone call saying “your son built on council land again and he had to take it down”.

As he matured he started showing his love for the community. He was one of the youngest men to ever join rotary Australia, it was his way of thanking god at a second chance of life. He also got nominated for young Australian of the year and turned it down as there were others who deserved it more than himself.

He was able to live his dream of hiring a big RV and travel across the US not once but twice.
The infectious smile he wore all day when he ran out screaming he was going to godfather to a beautiful baby girl. That smile continued when he got the chance to humiliate his mate in front of everyone as it was his job to, being best man and all.

That smile will be forever be engraved in our hearts.

Like so many others, another life that
was cut short.

Kyle Zandona

27.10.1991 – 25.12.2016

A courageous young man and a true inspiration to us all…

Early in 2017, I received a message from one of Mitch’s close friends at St Pauls College, Sydney Uni, to let me know there were boys from the College undertaking fundraising for Chris O’Brien Lifehouse on behalf of Cooper and another young sarcoma patient, Jack Gibson from Sydney Uni, who had then recently been diagnosed. 

I was torn.  Such generosity of spirit by the boys at this college, many of whom had known Cooper since he was an eleven year old, yet it was accompanied by such devastating news of yet another young life, and another family affected by this insidious cancer. I offered whatever support I could to the family through the College, whilst acknowledging this family’s likely need for privacy.   A sarcoma diagnosis has the propensity to rock even the strongest of individuals, lives, and families to the core.  It is savage, relentless and life-altering.

At that time, unbeknownst to me, there were in fact two fundraising events that had taken place,  involving students from St Paul’s, St Andrew’s and Wesley Colleges, together with many students who were not attending the university, but were friends, or had a close association to the cricket club.   The latter groups were very close to Jack, his younger brother Harry, and the Gibson family.   This culminated with the shaving of heads in the St Paul’s bar one night in a very personal statement of support to Jack.  As Suzie, Jack’s mum described it so beautifully – the gesture ” was about so much more than fundraising for us. Jack’s brother, his friends from school and cricket were all devastated when he was diagnosed with cancer and felt totally helpless. They wanted to do something to help but didn’t know what. They recognised he needed their support and when he started to lose his hair as a result of his treatment, they realised how confronting this was for Jack so they all immediately decided to shave theirs as a show of support and solidarity, whilst raising an outstanding sum of $36,000 for Chris O’Brien Lifehouse, where Jack received his treatment.

Cooper at this stage had not responded to mainstream treatments, and we were frantically sourcing global clinical trials and treatment options. It was indeed a stressful time, yet I clearly remember my thoughts had wandered to this young patient and his family so often.  A young man with the same cancer, treated at the same cancer hospital, a similar age, the same passion for sport and attending the university Cooper intended to attend, following in the footsteps of his older brother.  The similarities were there, yet even within the same sarcoma subtype, outcomes can differ greatly.

Jack’s name would come up regularly over the  months ahead, as it turned out, so many members of our social circle overlapped into Jack’s world.  We were able to keep abreast of his progress and to eventually know his treatment had been successful.  I remember the overriding feeling of joy and relief I felt, when this was confirmed by his mum Suzie.  

Jack has an extraordinary family who have been by his side his side throughout his sarcoma journey.  Their love and support has never waned, and despite the hell they have experienced at the hands of this cancer, they are simply the loveliest people you could ever hope to meet.

September of this year , we held our Chairman’s dinner, hosted at the NRL Museum, NRL HQ, and Jack selflessly agreed to speak to our high profile collective of guests, about his diagnosis and subsequent gruelling treatment.  In doing so, He captivated our guests, providing them with valuable insight into the life of a sarcoma patient.   This was the first time Jack had spoken publicly of the road he had travelled, and to do so, showed such courage and bravery.  You could hear a pin drop in the room as this articulate young man spoke.

It is such a great privilege and honour to welcome Jack to our Executive Committee, and each of us is looking forward to working with this amazing young man, and to make a quantifiable difference to those patients  living with a sarcoma diagnosis.

2019 Australasian Sarcoma Study Grants open

The ASSG is pleased to announce the 2019 funding round for the Sarcoma Research Grants is now open.

 

To read more please go to

http://www.australiansarcomagroup.org/2019-sarcoma-research-grants

 

Talented, successful, and making a difference in the world….

Every now and again, a family comes into your life whom quietly and without fuss make an enormous impact.  The Autores are one such family.

The Autore family, preside over the Autore Group, which is one of the largest South Sea pearl companies in the world, and providores of quality assured luxury jewellery and South Sea Pearls.

The remarkable success of The Autore Group is testament to the innovative vision of Founder and CEO – Rosario Autore, whose designs have become celebrity favorites worn by Angelina Jolie, Halle Berry, Sarah Jessica Parker, and Selena Gomez, to name just a few.

However the Autore branding is very much a family affair.  Rosario’s very talented wife Jane is Design Director, and daughter Ruby is simply outstanding as Director of Marketing, and both share the same depth of passion for the family business as Rosario himself.

A visit to the Autore pearl jewellery design entity in Sydney’s CBD, is an experience in itself.  Set high on level 32, with harbour glimpses, you cannot help it be in awe of the myriad of magnificent designs, and the magnitude of the work going on behind the scenes.  The pearls are individually graded by hand and eye, in preparation for distribution to the world’s most prestigious jewellery houses and wholesalers, and it is a veritable hive of creative activity.
However it is not the physical location, nor the glamorous surrounds that stand out the most, it is the warmth and welcoming nature of the Autore family.  This is a family who not only work together, and represent a collective of creative genius, but they also share an indescribable capacity to give to others.

Earlier this year after the Indonesian earthquakes, the family set up a Go fund me account for the Lombok Earthquake victims, for those so badly affected in a region for which the Autore family held a long association, through pearling.  This campaign has raised over $63,500 in two months, and is well on its way to achieving its $200,000 goal.  I would urge each of you who reads this blog, to press the link below, and to contribute to this very worthy cause.

https://www.gofundme.com/npx5ee-lombok-earthquake

I have heard many stories about this family’s capacity to give, and to help others who may be in need, yet I was still surprised at the magnitude of random acts of kindness, always behind the scenes, this family were responsible for.

Our family was one of those blessed to have been a recipient of the Autore family generosity.  Cooper had attended Scots College with son Luca and a lovely friendship was forged.  One of our family’s favourite photos prior to Coop’s passing, was from Luca’s 18th birthday, when Coop was clearly having the time of his life, and without a care.  Moments such as those were so rare for Coop, and so very precious to us.

We thank Luca sincerely for his beautiful words: 

I met Cooper during our time together at Scots and or friendship sparked instantly through our similar interests in sport, this connection grew even stronger after he moved to Sydney Grammar. 

Throughout high school we created a strong bond through our friendly competitiveness in sport and would always attempt challenge each other, whether it be who scored the best try in touch or who got more points in a game of NBA 2K. 

Playing Rugby throughout our school years, Cooper and I would often find ourselves marking each other on the field. He had grit and raw competitiveness which was something I always admired in him and would always strive to match. He was able to play any and every sport with such talent and grace, truly an all-round sportsman.  

Cooper’s sense of humour never ceased to bring a smile to my face and his infectious laugh would always brighten up the mood of everyone around him. He could always bring out the best in his friends, family and those around him.

I will never forget Cooper’s ability to always hold himself in a positive light no matter the situation, even during his unrelenting battle with sarcoma. He was always able to take the setbacks in his stride and face them head on with courage and a good sense of humour, it was something I greatly respected in him. 

After undergoing various treatments, I was so glad that Cooper was well enough and able to attend my 18th birthday party in April 2018. It was great to see him enjoy himself and share memories with not only me but many of our good friends.

My friendship with Cooper is one I will always treasure as he was always able to look positively at every situation. He had an extremely special energy and happiness which rubbed off on everyone, including myself, and I’m grateful for sharing so many special memories with him.

Miss you Coops.

The Autore family, and the company solicitor Michael Furlong, were the first to put their hand up to provide two superb pieces for the launch of  CRBF on March 28, 2017.  Their generosity returned over $6000 on the night, which went directly to the inception of the Comprehensive Sarcoma Centre at Chris O’Brien Lifehouse.  I remember Cooper commenting on how much the gesture meant to him at the time…

After Cooper’s passing, the family once again showed immense generosity of spirit, in overseeing the design of The Cooper, a bracelet which Jane placed so much love, consideration and thought into designing.  Each intricate detail, was clearly put into place, with our precious son in mind, and it was indeed so very difficult to contain emotion, when the finished result was unveiled.  It was the very essence of Coop.

During a time when our family has literally been brought to its knees with grief, there are families like this one, who have reminded us we do not walk this road alone.  With their love, kindness and profound generosity, they have gone over and beyond to ensure there is a lasting legacy of Cooper to be found in their exquisite creations.

When you lose a child, those connections you may have with the past are so very meaningful, and statements such as this exquisite piece, become a lasting memory for each of us to hold on to.

The Autore family through their generosity of spirit, have also provided a great deal of hope to young sarcoma patients, with ten per cent of each sale being directed to urgently required clinical research into sarcoma.

Rosario, Jane, Ruby and Luca, words simply fail to express our infinite gratitude to each of you.

To purchase ‘The Cooper’, and in doing so contributing to research for young sarcoma patients, go to

https://www.autorepearls.com.au/jewellery/

Sarcoma included in new data released for childhood cancers in Australia

Cancer Australia has released initial National Data on Australian paediatric cancer stages at diagnosis, including the rare and aggressive Sarcoma cancers.

This data covers sixteen major cancer types, which represent approximately three-quarters of all childhood cancers diagnosed in Australia. To see more please see ASSG’s press release or visit

https://childrenscancer.canceraustralia.gov.au/stage-diagnosis-data

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…