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

 

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

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

Truly beautiful inside and out…

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

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

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

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

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

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

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

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

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

Adam Shaw – His sarcoma journey told through the words of his mother Gabrielle

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.

Meet 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...

 

 

Elliott Miller. In the words of his mother – Henrietta

To mark global sarcoma month, CRBF will be conducting a series of interviews, and publishing tributes to patients and loved ones affected by sarcoma, in an effort to portray the human side of this insidious cancer.

I met Henrietta Miller late last year, after she took the time to reach out to me, when I was in the depths of despair after Cooper’s passing.

Henrietta is a gentle and quietly spoken woman, with a huge capacity to give to others.   I was pleased I had accepted her invitation to visit, as she is one of the few people who can say they deeply understand the myriad of emotions, and the never ending wall of grief you experience after the loss of a child.

Henrietta’s son Elliott had tragically passed away prior to Cooper, and was treated within the confines of Chris O’Brien Lifehouse as Cooper was, and treated by many of the medical team who had also treated Cooper.  It was indeed not lost on me our commonality was borne through deep seated tragedy, and at times throughout our conversation, and through the tears, I found myself wondering why it was we were brought together by circumstances that really should never be?  Our boys were bright shining lights at the very beginning of the wonderful lives ahead of them.

I will never forget Henrietta’s serene manner, and the selflessness, and kindness she showed our family, by reaching out to us at a time when we were at our lowest ebb.  It must have been very difficult to do so, knowing that it would undoubtedly open wounds of the past, yet this amazing woman put her own emotions aside to help others.

Today we celebrate the essence of Elliott Miller, in Henrietta’s words…

 

 

Elliott John Miller 27/12/94 – 01/03/16

 

Elliott was a second year arts student at Sydney University majoring in performance studies. His was a fairly typical lifestyle for such a student, many late nights with the occasional burst of essay writing to just about keep things on track. Taking every opportunity to perform, he spent the better part of 2014 concurrently rehearsing at least five shows and dedicated 2015 to his burgeoning career as a director. The only complaint anyone could ever make about Elliott was really a complaint about a lack of hours in the day in which to gain an audience with him.

In August 2015, Elliott had been complaining of a sore jaw when he ate, but trips to his dentist and x-rays had not shown anything untoward. In mid September though, a specialist dentist finally ordered an MRI scan which revealed a tumour. Following a biopsy his initial cancer diagnosis was Ewings Sarcoma, but this was later changed to an embryonic Rabdomyosarcoma; an incredibly rare form of childhood cancer, one that only affects about seven adults a year worldwide.

In October 2015, with all our lives inextricably changed forever, Elliott began chemotherapy  and radiotherapy at the Chris O’Brien Lifehouse, under the care of Professor Tattersall. Unfortunately, despite everyone’s best medical efforts, nothing could halt his tumour rapidly spreading from his jaw to his lungs where it continued to grow.

Elliott died on 1 March 2016, a little over four months after his diagnosis. He was 21 and on the cusp of an incredible future. Elliott performed right to the end, and never lost his sense of humour or the ability to saunter onto any stage, own it and make people laugh. Whether as a stand-up improv comedian, actor or director, Elliott never failed to impress.

He and his enormous potential are deeply missed by all his family and his extraordinary number of friends.

July – Global Sarcoma Awareness Month

Yesterday marked the first day of global sarcoma awareness month.  A month where we  take the time to remember and to honour the memory of those who have needlessly lost their lives to this cancer;  provide unconditional love and support to those you may know going through gruelling treatment regimes; and to provide hope for the future for those who are yet to walk this road, and those undertaking the battle of their lives, by talking about this cancer, and donating to sarcoma research.

A sad goodbye to a beautiful, bright shining star…

March 12, 2018

 

 It is with profound sadness, we have learned of the passing of Gabriella Wehbe, a courageous, and inspiring young lady who staged a fearless and hard -fought battle with rhabdomyosarcoma. Gabby and Cooper were the same age, and were both treated by the outstanding sarcoma team at Chris O’Brien Lifehouse, and this is how they met.

As a family, we were in awe of Gabby’s strength, and humility and the grace in which she took life in her stride, making every moment count.  We will never forget the 15th November, 2016, at Sydney University Great Hall, when she and Cooper, despite their personal adversities, delivered speeches outlining their respective sarcoma journeys.  Together these bright shining lights, contributed to the outstanding amount raised that evening, of over $500,000, which benefitted the Comprehensive Sarcoma Centre at Chris O’Brien Lifehouse.

Gabby’s speech reminded the guests that night, that no matter how tough the day is, it is nothing in comparison to what young sarcoma patients face hourly, and most choose to simply get on with the job at hand.  Rarely a day passes when I do not recall Gabby’s or Cooper’s words from that evening, which are etched in my memory forever.

Suffice to say, Gabby would never quite know or understand the joy, the hope and the inspiration she brought to so many.  She will remain a beacon of light in our lives which are enriched as a result of the inspiration you provided so many

Our hearts tonight break for the Wehbe family, and we join with all of those whose lives Gabby touched in sending love, light and strength in abundance to her wonderful family.  We understand all too well, your unfathomable loss, and we vow to continue our work in fond memory of the bright shining stars, who have touched our lives forever.

 

Sarcoma does not have a face, until that face is someone you love…

March 3, 2018

“My dream is for urgent and much needed change to assist sarcoma patients globally. The inception of my Foundation was and is, for the purpose of instigating this change, and to use my significant sporting affiliations, and my passion for journalism to raise grass level awareness, thus stimulating critical funding.

Put simply, my role now is to be the face of the Cooper Rice-Brading Foundation, and the human face of sarcoma, and to ensure my story is told.  No matter how difficult my journey,  I need to convey to others the personal side of this diagnosis, and the need for the critical change required to significantly alter the trajectory for  sarcoma patients everywhere.”

(Cooper Rice-Brading – June 12, 2017.)

 

Friday the 26th February, 2016, marked a very dark day in our lives.  It was the day Cooper underwent a routine MRI to diagnose a suspected tear in his bicep, and after two hours wedged in an MRI machine, anxious, alone and bewildered at the time the process was taking, he was to eventually find his life had irreversibly changed.  A routine MRI had become what was to be a death sentence for our precious son and brother.

Osteosarcoma is an insidious cancer by any standards, and is now classed with other sarcomas, among those childhood/young adult cancers with the worst survival outcomes.  Despite this, it has by and large, been overlooked, and there is statistical evidence to suggest diagnoses are rising, with a  documented 40% increase from the previous decade. (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.)

It is then perplexing to say the least, this cancer has not received the attention it so desperately needs, together with funding that has been missing from the Australian Government cancer budget.  Instead, philanthropy is responsible for the vast majority of  funding, and most often comes from the loved ones and their friends, of those children and young adults who have tragically lost their lives.

Sarcomas are part of the rare or less common cancer collective which are responsible for the deaths of 25,000 people per year in Australia.  These figures account for half of all cancer deaths, and many of these patients did not have access to treatment options simply because their cancers were rare.  Approximately one third of cancer diagnoses are rare or less common cancers, consequently a key recommendation of Rare Cancers Australia, is for a third of government research spending in cancer be directed to rare or less common cancers.  (Rare Cancers Australia, Rare Solutions A Time to Act 2017).

On average, seventeen life years per patient are lost due to sarcomas which is an impact three times greater than bowel, lung or breast cancer.  The cost to the community through the health system of bone and connective tissue tumours was $29,593 in 2003, (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.), more than three times that of colorectal and breast cancer combined, and yet there has been no marked improvement in life expectancy, nor treatment options. Current figures are not available, and in all likelihood would show a marked upward trend since 2003.

The needless loss of life, the sheer emotional hell experienced by patients, and the lack of mainstream treatment options, which may accompany a sarcoma diagnosis, are no longer acceptable, and never were.

Cooper’s face, ‘the human face of sarcoma,’  in videos, photos, documentaries and interviews  is a constant reminder of  the work we continue to do in his absences, and why as his family, we continue to do it…