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.

How do we begin 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…

 

 

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.

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.

Charlii Croese. From the heart…

As we continue through July, international sarcoma awareness month, we are honoured to be presenting a number of stories from young patients and their families.

Today we are going to introduce you to Charlii Croese. Charlii is an engaging, effervescent young lady, who despite her challenges with sarcoma, has never missed a beat. Charlii has shared some valuable insight into life since her diagnosis.

At an age when the most difficult decision most sixteen year olds have, is what to wear, Charlii was battling osteosarcoma of the femur, undergoing unspeakably rigorous treatment regimes and surgeries.

Unless you have witnessed the devastation this cancer causes first hand, you cannot begin to imagine what these young patients go through, and yet Charlii, and Imogen like so many others, refuse to allow this disease to define them.

To say we are full of admiration and reverence for Charlii, and other young patients traveling this road, is an understatement.

Charlii Croese in her own words

I was diagnosed with osteosarcoma in my femur on 29th of February 2016. I was 16 years old…

What I struggled with most was seeing everyone around me move on with their life and mine just stood still. I wasn’t normal compared to all of my friends.

I lost many other cancer patients that I met through my journey and I felt so guilty to still be here without them. They became my family.

I lost many friends that couldn’t deal with me being sick so they stopped speaking to me and would ignore me.

I became quite depressed while going through treatment as I was always either stuck in a hospital bed or at home staring at the same four walls.

Still to this day whenever I get any ache or pain in my body I always think the worst.

Each day I always have a moment where I think about my journey. I still struggle everyday with what I’ve been through and how many people I’ve lost. So everyday I just tell myself I’m a fighter and to be positive and take everyday as it come.

Mum always said to me everyday while I was battling cancer take it one day at a time and ’til this day it is exactly what I do…

The unstoppable Imogen Atkins…

Imogen Atkins is an extraordinary young lady by any standard.   Imogen’s sarcoma diagnosis was made at the tender age of  15.  Her life was immediately turned upside down, undergoing a rigorous treatment regime  including major surgery,  but she like many other sarcoma patients, has chosen not to allow this cancer to define her life.

Prior to her diagnosis and the subsequent commencement of her treatment Imogen had the most beautiful long hair, which most teenagers (and adults) would envy. Knowing she would lose her hair throughout chemotherapy, she instead had it cut, and donated it to ‘Hair with a Heart, raising in excess of $27,000 in the process.  Her magnificent hair was then used to make wigs for patients with medical conditions causing alopecia, and many patients benefitted from her huge heart, and enormous generosity of spirit, when she was going through so very much herself at the time. Her capacity to think of others at such a young age is truly remarkable.

Imogen, now days away from her 17th birthday, defies the cancer she has battled, by resuming the sporting activities she loves, and selflessly helps others through her work with the Queensland Youth Cancer Service.

Imogen continues to embrace life to the fullest, and is a constant reminder to those around her how to rise above adversity and find meaning in your life, despite the hurdles that may come your way.  She is wise beyond her linear years, and we extend our heartfelt thanks to her, for sharing part two of her journey.

We cannot wait to see where life takes this inspirational young woman.

Imogen Atkins – in her own words…

 
After going through 8 months of chemo, it is amazing to be able to be back doing more normal things.  I still face regular check ups, and ongoing rehabilitation, but in no way have , or will I, let that stop me from trying to do and achieve what I really want.

Let’s start with school.  At the moment I am halfway through my final year and on track to get a good OP. even though many people encouraged be to , a) repeat year 11, and b) to go down the path of getting a Rank instead. I have experienced a lot of times when I really had to push for what I wanted, and I’ve learned that if I know I can achieve something, I should push and achieve it.

Prior to the cancer, I was a very avid rower.  It was truly heartbreaking and difficult when I was told I might not be able to row again, but being the persistent and slightly stubborn person I am, I refused to take that as a never.  As soon as i was able to, I worked at regaining my strength and bend in my knee.  So now I train several times a week, I am part of a crew, and it is amazing to be back on the water.  Despite the cold mornings of training, being on the water is one of the most important things to me, and brings me so much joy.

I have also found out that I like having a voice.  I am now part of the Queensland Youth Cancer Advisory Group.  In this group I, and several others, advise Queensland Youth Cancer Service on health service planning, delivery, evaluation education and training, together with developing spaces and facilities for young patients and their families.  We talk and discuss with people who are looking to improve their services.  I am basically a voice trying to make another young person’s cancer journey or experience, just that little bit better, and a little bit easier.  I feel this is really good and important.

After my cancer experience, I realised that I have to step into life, find ways of doing things, and never give up on my dreams.  I can no longer ski, so I’m learning to snowboard.  Recently I sat on a panel of people at a medical conference. I travelled to London and Finland with my family, and this month I’m going to be bridesmaid at my sister’s wedding.  I am about as happy as i can be having gone through a year of cancer...

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