Kyle 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 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


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.

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

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.

A sad goodbye when the story continues

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…

A performance to remember…

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 to donate or press the link below

RCA 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

Adam Shaw – in the words of his mum…

Gabrielle Shaw became known to our family after the airing of Cooper’s story on the ABC 7.30 Report.

Gabrielle’s story resonated with me instantly and deeply, as she, like Henrietta Miller – Elliott’s mum, and I, had all lost our precious sons at such a tender age, to this insidious cancer.

A great deal of commonality existed between our boys, and the valiant way they chose to face this cancer, whilst continuing to live life to the full.  Each faced enormous physical andmental challenges, endless pain, an each remained strong and positive throughout, often protecting those they loved from the true reality of sarcoma.

As we each live our lives in a highly altered state, trying to make sense of our tragic losses – each knowing we never will, we also acknowledge how blessed we were to have witnessed the fine young men each of our sons had all become, albeit for such a brief moment in time.

We thank Gabrielle and her daughter Brianna for their participation in this forum, and for allowing the outside world to share a snapshot of the challenges young patients and their families face from the moment a sarcoma diagnosis is made.

Gabrielle Shaw writes candidly about her cherished son Adam

Adam was diagnosed with Cancer in September 2013. He was 21.

Adam had been experiencing pain in his groin during and after he played football. He was treated by a physiotherapist a couple of times, but found it wasn’t helping. One night he rang his sister Brianna saying he was in a lot of pain and that his mobility in his leg was limited. She advised him to go to the Emergency department and from there everything moved very quickly.

Tests showed a walnut sized tumour in Adam’s right pelvis. At that point Adam was living in country Victoria and we had to wait three weeks until we were able to get an appointment with the clinic at Peter MacCallum Cancer Centre in Melbourne. By this time Adam weighed 44 kilograms and his tumour was the size of a football. He was in a wheelchair due to extreme pain and because he couldn’t walk. His right knee was pinned up against his chest as the tumour encroached on nerves, muscles and blood vessels.

Adam was admitted to hospital as an inpatient, where he remained for nine weeks. At first it was unclear exactly what form of Cancer Adam had. Eventually he was diagnosed with a Malignant Peripheral Nerve Sheath Tumour, which is a form of Sarcoma on the nerves.

When Adam was first diagnosed I was working as a teacher at an International school in Hanoi Vietnam which complicated everything a great deal. Leaving my life behind in Hanoi, I flew home to care full time for Adam. When he was first admitted to hospital I didn’t have anywhere to live. Because Adam was an adolescent he was through the amazing people at On trac at the hospital and our social worker soon secured me a room at the incredible Vizard House in East Melbourne.

I learnt a lot about the good and beauty in others from my nine weeks at Vizard House. The most important lesson was compassion and empathy knows no limits. Regardless of how horrendous each persons day had been with their sick family member, everyone always found time to listen to, empathise, comfort and discuss others day and stories.

We discovered very quickly just how sick Adam really was and within days of admittance he was moved to the ICU with a severe infection within the tumour. We were informed at that point we may or may not have 24 hours left with him. Adam had to decide such things as should he freeze sperm for the future, should he sign a DNR, (which he never did because he couldn’t make that decision) and somehow process even a tiny amount of what our treatment team was advising us to do. Thankfully after a few days Adam was moved out of ICU into a normal ward and thankfully due to his age he always had a room to himself. Adam and I soon got into our daily rhythm. He was too sick to be mobile for the first month, so would get transferred to treatment and tests in his bed, with me accompanying him everywhere. I soon learnt what every sound, whimper, groan, cry or facial expression meant. This became vital as Adam was always hesitant to request breakthrough pain relief when he required it and I did become his voice.

The treatment team decided Adam was too sick for chemotherapy and it didn’t have a good record for treating Adam’s form of Cancer. So, Radiotherapy was the decided treatment in the hope it would shrink the tumour enough to make surgery a viable option. Adam had two rounds of radiotherapy. We were told due to the size and positioning of the tumour it was going to be difficult and the best outcome, if it was operable Adam would lose his right leg. Early December Adam had a Pet Scan to see if the first round of radiotherapy had shrunk the tumour. Regrettably during the Pet scan metastasis were discovered in both his liver and his lung.

Adam was discharged in December and we were asked to return after Christmas for more pet scans to find out whether the radiotherapy was going to make surgery possible. Unfortunately, the answer was no and we had to face the reality any future treatment was palliative. Trials were discussed with the treatment team, but Adam was just too sick. Adam chose to spend the majority of the two months he had remaining at home, with intermittent trips and stays in hospital. The radiotherapy had damaged a large portion of Adam’s skin on his pelvis and then the tumour broke through the skin. We had a palliative care nurse visit daily to debride the wound sight and change the dressings.

On the 17th February 2014 we were told Adam had approximately a week to live. The tumour had perforated the bowel and he had to choose whether he wanted to die at home or at hospital. How does someone of his age ever make that decision? Adam chose to die in hospital. He chose to go to the hospital on the 21st February and we were with him around the clock. The 22nd we were told we should say what we wanted or needed to say as he wasn’t going to be lucid for much longer. On the morning of the 25th February at 5AM Adam woke screaming. He was haemorrhaging from the open wound.

My beautiful boy died at 8:30 PM on the 25th February 2014. He was 22 years of age.