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

 

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

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

http://www.rarecancers.org.au/page/1150/about-the-knowledgebase

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.

ACRF & The Centenary Cancer Research Centre provide much needed hope for sarcoma patients

ACRF together with the Centenary Cancer Research Centre provide hope for sarcoma patients

 

On the 30th May, I had the pleasure of attending an Australian Cancer Research Foundation function, where key speaker, was Professor Phillip Hogg, Director, Australian Cancer Research Foundation (ACRF) Centenary Cancer Research Centre, Centenary Institute, spoke at length about PENAO, which is an experimental anti-cancer drug which he invented.After searching the globe for experimental treatments for our son Cooper, which showed signs of efficacy for rare cancers such as sarcoma, it was indeed a relief to finally hear there has been headway made in this crucial and much needed area of research.

PENAO has recently completed a Phase I clinical trial in patients with solid tumours at three hospitals in Australia.  It inhibits an enzyme central to sugar metabolism in tumour cells called mTOR, and combines very well with another mTOR inhibitor, everolimus.  Everolimus is an approved cancer drug.  Together, these drugs deplete cancer cells of mTOR.

A Phase I/II trial of PENAO in youths and adults with sarcomas that have an activated mTOR pathway based on mutation analysis is being planned.

mTOR pathway aberrations include PIK3CA mutation, biallelic PTEN loss, TSC2 mutation, Akt mutation, etc.  The Phase I component is 2 x IV PENAO dosing per week to define the Phase II dose.  The Phase II component is PENAO + oral everolimus.

ACRF funding helped establish a world class Centre for Basic and Translational Cancer Research on the Royal Prince Alfred Hospital site. This state-of-the-art facility houses the basic and translational research components of a Comprehensive Cancer Centre (only the second in Australia). The new centre extended the reach of basic biological research on cancer and its translation into cancer prevention and control.

The Centre was officially opened in March 2016.

Grant applications - ACRF this year will include:

  1. 2018 $10M Major grant
  2. 2018 Annual grant

The Cooper Rice-Brading are proud to provide our continued support the Australian Cancer Research Foundation.

Garvan Institute – Sarcoma Research

Using whole-genome sequencing to research deeply into our DNA has led to the discovery that all disease is linked to genetic mutations so that instead of trying to treat disease symptoms, we can now target the mutations causing them. This is personalised medicine.  Read more about the outstanding work of the Garvan Institute, providing untold hope for sarcoma patients.

https://www.garvan.org.au/research/diseases/sarcoma/research

Therapeutic target for Ewing sarcoma

The sarcoma research group of the Bellvitge Biomedical Research Institute (IDIBELL), led by Dr. Òscar Martínez-Tirado, has identified a potential new therapeutic target for Ewing sarcoma, the second most frequent bone cancer in children and adolescents, and a tumour known by its aggressiveness and tendency to metastasise.

https://www.news-medical.net/news/20180405/Researchers-discover-potential-new-therapeutic-target-for-Ewing-sarcoma.aspx

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