CRBF Sarcoma Awareness Month

Sarcoma Awareness Month

CRBF Press Release

July is Sarcoma Awareness Month, and the Cooper Rice-Brading Foundation (CRBF) has once again joined the global initiative to raise awareness of sarcoma, a cancer that sadly shatters the lives of far too many patients and families. 

Each year, CRBF funds innovative research leading to a cure, and supports sarcoma patients from diagnosis throughout treatment and beyond. Throughout July, the Foundation’s efforts to spread sarcoma awareness are accelerated.

Sarcoma can affect all ages, but hits our young disproportionately hard.  Of all childhood cancers, one in five is a sarcoma, and survival outcomes remain amongst the worst of all childhood cancers. Yet, sarcoma receives less than one per cent of total cancer funding. 

This July, the Foundation is calling upon anyone impacted by sarcoma, to upload the #sarcomafootprint image to social media, which can be found on the CRBF Instagram (@crbfoundation) and Facebook pages, to highlight sarcoma’s devastating footprint.  

With each step forward, with time, and with carefully targeted funding and research, we can all fight sarcoma together and help to find a cure.

CRBF Chairman, Robert Beech-Jones said the Foundation is hoping to spread an important message during Sarcoma Awareness Month.

“It’s been an incredibly tough start to the year for all Australians, however, for some it’s been made even worse with the sarcoma diagnosis of a family member or friend. or the devastating passing of a loved one,” Beech-Jones said.

“Despite the outstanding efforts of many in the sarcoma community, survival outcomes and treatment options have not changed significantly in almost 40 years, while other cancers are making important inroads into finding a cure.

“Through more funding and research, we’re aiming to facilitate an eventual cure for sarcoma and to stop lives being cut short.

“We understand how difficult 2020 has been for most, but unfortunately cancer doesn’t slow during times of hardship, and each day more young people are being diagnosed with sarcoma.

“We’re hoping we can continue to help raise awareness of sarcoma, and to ensure more people are informed of its prevalence and severity.

“Please join us in using #sarcomafootprint this July by uploading a photo of the CRBF footprint, if you or someone you know has been impacted by sarcoma.”

For those living in Sydney, Melbourne, Adelaide, Brisbane and Gold Coast, keep an eye out for CRBF digital billboards on major roads promoting sarcoma awareness messages from July 6. The billboards were kindly donated to CRBF by QMS media, on behalf of Daniel’s Race for a Cure conducted by the Alchin family, in memory of Daniel Alchin.

To launch Global Sarcoma Awareness Month, CRBF, together with their West Australian counterpart, Sock it to Sarcoma!, have worked collaboratively to produce the podcast series: Let’s Talk About Sarcoma. Hosted by Cathrine Mahoney and Michael ‘Wippa’ Wipfli, the podcast will be available through Apple podcasts, or at crbf.org.au, with episodes set to be released on July 3.   This series will cover the expected, the unexpected and everything in between, of a sarcoma diagnosis.   Patients, families, clinicians and researchers will provide the raw and honest narrative.

Cooper Rice-Brading sadly lost his brave fight against bone cancer in 2017, just 18 months after being diagnosed with osteosarcoma.

Prior to his passing, Cooper incepted the Cooper Rice-Brading Foundation to raise much needed funding for research into sarcoma, with the vision of improved survival outcomes and treatment options for all sarcoma patients.

‘Let’s Talk About Sarcoma’ Podcast

In a collaboration to mark global awareness month, Sock it to Sarcoma and the Cooper Rice-Brading Foundation will host a series of free podcasts, to provide sarcoma patients and their families with a reliable resource from diagnosis to treatment and beyond. This series will be hosted by popular Sydney media identity, Michael ‘Wippa’ Wipfli and seasoned podcast presenter Cathrine Mahoney, creator of “So I quit my day job”.

In episode one we discuss how Sock it to Sarcoma and CRBF were incepted, and why, the need for what we do, our aims, and the current research we are funding. Special guest for the episode will be Dr Densie Caruso, CEO of the Australia New Zealand Sarcoma Association, discussing sarcoma. What it is, symptoms, and the importance of seeking professional advice, via a sarcoma specialist multi-disciplinary team.

Episode two will be broken into two parts, and will see patients from a cross section of sexes, age groups, and differing sarcoma subtypes, speaking about their experience from the moment they were symptomatic, diagnosis, treatment and beyond. This will be a raw account of each patient’s journey, with a special section on fertility and survivorship.

Episode three will see the spotlight shone on the families, friends, siblings and those who have tragically lost a loved one to sarcoma. This will provide a sensitive insight into managing the family dynamic leading up to diagnosis, throughout treatment and beyond. It will also explore grief, and the dire impact of losing a loved one to this cancer.

Episode four sees us finishing on a very positive note, when we hear from our leading researchers, clinicians, and a psycho-social researcher, covering a myriad of topics, which will provide hope for the future for all sarcoma patients.

Sarcoma & Covid 19 Govt guidelines


Information for people with cancer about COVID-19

Whether you have cancer currently, had cancer in the past, or are caring for a loved one with cancer, the situation may be more challenging than usual. Your treatment team and all those working in cancer support and care, are working as hard as we can to make sure that you receive the best treatment and outcomes possible.

People with compromised immune systems or pre-existing medical conditions, including cancer, may be at increased risk of contracting coronavirus (COVID-19) and increased risk of more severe infection.

Our knowledge about COVID-19 is changing rapidly. If you are receiving cancer treatment that suppresses your immune system and you develop a fever or respiratory symptoms, call your oncologist or a member of your treatment team, as you usually would if you develop a fever while on treatment. Be sure to follow their guidance on actions to take.

Everyone should practice good hygiene to protect against infection, including people who have had cancer

Good hygiene includes:

  • washing your hands often with soap and water for at least 20 seconds, or using alcohol-based hand sanitiser
  • using a tissue and cover your mouth when you cough or sneeze
  • avoiding close contact with others, such as touching
  • avoiding touching your eyes, nose and mouth.

People at increased risk of getting sick from COVID-19, such as people receiving treatment for cancer, and people living with metastatic cancer

As well as practising good hygiene:

  • ensure you have adequate prescription and over-the-counter medications
  • try to keep space between yourself and others
  • when you go out in public, avoid crowds, stay away from others who are sick, limit close contact and wash your hands often for at least 20 seconds, or using alcohol-based hand sanitiser
  • avoid non-essential travel.

If there is a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.

For family, friends and carers of people at increased risk of getting sick from COVID-19

Follow advice for good hygiene to protect against infection, including:

  • washing your hands often with soap and water for at least 20 seconds, or using alcohol-based hand sanitiser for at least 20 seconds, or using alcohol-based hand sanitiser
  • using a tissue and cover your mouth when you cough or sneeze
  • avoiding close contact with others, such as touching
  • avoiding touching your eyes, nose and mouth.

Avoiding contact with people in the community who are unwell.

There is no vaccine for COVID-19 yet.  However, this year, it is important to have your influenza vaccination as early in the flu season as possible.

Useful COVID-19 information links

Current status on COVID-19 in Australia – Department of Health (Australia)
COVID-19 Consumer messaging kit –   HealthDirect’s answers to questions and symptom checker
Advice for the public about COVID-19- World Health Organization

Coronavirus Health Information Line

Call this line if you are seeking information on novel coronavirus. The line operates 24 hours a day, seven days a week.

Phone: 1800 020 080

The Cancer Council Helpline

Cancer Council is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. Call if you have a question about cancer, or if you’re seeking emotional or practical support.

Phone: 13 11 20

Follow us on Twitter @CancerAustralia to get news and updates.

Cancer Australia information hub about COVID-19 and cancer

Cancer Australia has released an Information about cancer and COVID-19 website hub, providing advice and information for Australians affected by cancer and a repository of up-to-date, evidence-based resources and guidance for health professionals and researchers from Australian and international organisations in the wake of the coronavirus (COVID-19) pandemic.

The website will be updated as new information is released.

Great people doing great things…

August of 2019 saw Swans rising star Nick Blakey shining a light on sarcoma in memory of  Cooper, who was his team mate and, at times, his on-field adversary. Nick did this by attending a training session at the East Sydney Bulldogs home ground at Trumper Park, a ground that holds so many memories of Nick and Cooper fiercely contesting the AFL ball during their junior years. In Nick and Coop’s teams over the years were many other young keen players, including Jack Weinert and his younger brother Tom, who were overseen as coach by their Dad, former Sydney Swans Chairman & President Peter Weinert, a quiet and understated man who had volunteered his time to coach the boys.

Peter contacted CRBF after he saw the article published on Nick’s visit, writing the following:  “By going to Trumper Oval when Nick did, it resulted in an article in the paper which may attract people such as me, who may like to contribute even in a very small way initially, to the incredibly important cause you are now involved in”.  Peter also shared a precious photo from those Easts Bulldogs days, and in an unexpected twist was pictured standing side by side with Cooper in a team photo which included his son Jack, as it turns out, he was Cooper’s original coach at Trumper (pictured).

By means of background, Peter, when Chairman and one of the private owners of the Club, played a leading role in the survival of the Sydney Swans in Sydney.  In 1992 he led the fight to save the Swans from extinction in Sydney, together with the great support of Mike Willlesee and Craig Kimberley after several years of on field turmoil and potential financial ruin. Along with Basil Sellers and John Gerahty, overseas based Owners also providing financial support, these five were inducted into the Swans Hall of Fame in 2015 under the Heritage Listing as “True Believers”.

In 1996, less than four years after the club faced extinction, the Sydney Swans played in their first AFL Grand Final under the then revitalised new Club administration, and Peter along with his co-Owners were permanently etched in Swans Club history.  After eventually serving as the No. 1 Ticket Holder for 11 years Peter became a Patron of the Swans, and it is indeed fitting the Player’s Club Lounge at the SCG bears his name. 

Through Peter’s understated generosity, together with Nick’s willingness to volunteer his time to memorialise his former team mate at Trumper Oval, Peter now holds the distinction of being our largest individual donor directly supporting clinical research into sarcoma.

It is difficult indeed to articulate our thanks to Nick and to Peter for their thoughtfulness, selflessness and generosity.

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Vale Tom Hardyman 17/6/1999 – 22/04/2020

Resilient, courageous, humble and brave.   Four words that we have come to know commonly relate to young sarcoma patients.

Throughout a cruel battle with osteosarcoma, spanning four and a half years, Tom Hardyman embodied each. 

Tom lived his life to the full, despite the immense challenges he encountered at the hands of the insidious cancer, osteosarcoma.  Tom lived a quarter of his brief life on a knife’s edge, often in unimaginable pain, and forced to contemplate his mortality at from the tender age of 16, when he was diagnosed. He did so with immense dignity and grace.

Tom’s battle with sarcoma was silent.  It was relentless as it was selfless.  He did not want others to be afraid or saddened by his diagnosis, and he fought hard to have his life remain normal in a highly abnormal situation.

While undergoing eight months of chemotherapy, he completed year 12 with outstanding results and received a university scholarship to study mechanical engineering. His dream career was to work as a Formula 1 race engineer and he was well on his way to achieving that goal gaining valuable work experience with V8 and Porsche supercar teams and more recently as the data engineer for Gilmour Racing’s Formula 3 team. All the while he privately managed the many challenges his sinister disease, sarcoma, threw at him along the way.  

Throughout this time, Tom’s family continued to inspire us all.  The love, grace, determination, and dedication they each showed Tom, is something that those of us who were privileged to witness their commitment, were left beyond words.  Mum Leanne, dad Paul, sister Chloe, and partner Jess, were instrumental in providing years of behind the scenes love and support to Tom, while selflessly allowing him to run his own race.  The extended family too numerous to mention, were as instrumental, and it soon became evident, this cohesive family was one very special team.  You would walk the earth to find a family more committed to their precious Tom.

The  Summit for Sarcoma 2019, is a shining example of the family’s ability to think of others, whilst in the midst of their own private hell.  Respecting Tom’s wishes for his battle to remain private, Leanne, his Uncle Andrew and cousin Ben, created a fundraiser which will see Andrew and Ben summit  Mera Peak in the Himalayas, with all funds raised by this superhuman feat, to be directed to the QIMR, for research into osteosarcoma.  Further to this, Tom’s Aunt Katie has donated hours of time and professional expertise to assist our work at CRBF, with Grandmother Jennie offering voluntary hours with fundraising events and networking with other families.

In view of this, it is hardly surprising the Hardyman family have asked for donations in lieu of flowers to be directed to the 2019 Summit for Sarcoma, to prevent other patients and families living the heartbreak they are forced to live.  Click the link below for information

https://activeqimrb.everydayhero.com/au/SFS2019

In late 2019, Tom’s future looked to be short, and in his distinctive style, despite his prognosis, and the unimaginable pain he lived with daily, he fulfilled a dream, of buying his very own McLaren car.  In what appeared from the outside looking in as a “middle finger” to the cancer that was ravaging his body, Tom spent hours driving his bright orange sports car around Brisbane and beyond, and in doing so found unbridled joy. He also shared the joy of his car with many others including complete strangers. From the outside looking in, Tom was the envy of many.  It just goes to show, we should never make assumptions about others, as we often just need to scratch the surface to reveal the true picture.

Living each day as our last is arguably a quality we only obtain, when there is a distinct possibility it could be. Tom Hardyman personified this, and in doing so, reminded us all of the precious opportunities life affords us. We are all currently traversing a testing period of our lives, and with so many restrictions in place, it is easy to dwell on what we can’t do, and neglect what we can do. But we must try to recognise the doors that have now opened in the current circumstances: We can spend time connecting with our family, we can study and read and learn things we wouldn’t have time for, and we can reflect on our own personal mental and physical health. We can make the most of every moment we have, just as Tom did during his inspirational journey.

From all of us at CRBF, we send our deepest and heartfelt condolences to Tom’s remarkable family and to his loved ones.

 

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The saddest of goodbyes…

Two years ago, a remarkable young woman came into our lives at CRBF.  Mikaila Brisbane was 22 at the time.

Mikaila had a smile that could light up a room, breathtaking beauty, a genuine love of others less fortunate, and a zest for life that was contagious. This young woman was a mother of two adorable toddlers, and the love she had for her children, her husband and her wonderful family was something to behold.

From the outside looking in, this young woman was living the dream.  Married to her childhood sweetheart, two lively, healthy children, a family who adored her and the promise of a wonderful life ahead fulfilling a myriad of hopes and dreams.

Life however had other plans. Mikaila was diagnosed with Alveolar Soft Part Sarcoma (ASPS) in February 2017, after a lump was found while she was on the trip of a lifetime with her long time partner Harley, who proposed marriage.  Her life became a living hell over three years, which saw her stage a courageous, valiant, and public fight against the cancer that had taken over an otherwise perfect life.

Alveolar soft part sarcoma is rare. There are approximately twenty cases diagnosed in Australia each year.

Mikaila chose to be very public with her treatment, surgeries, and all processes associated with this cancer, in an effort to heighten awareness and to promote early diagnosis.  She also vowed to let those know who held positions of power, that this was not ok.  Most importantly, she wanted to prevent other young patients going through the devastation of a sarcoma diagnosis.

Throughout her three year battle with this insidious disease, Mikaila’s one constant were her family.  Her two precious children, Indie and Reef, her husband Harley, her devoted mum Lisa, her grandmother Anne, her brother Christopher, and her Dad Gary.

Reading through Mikaila’s social media posts provide a heart- wrenching insight into what it is like to be living with a terminal illness.  This is magnified when the young woman in question is still classified as an adolescent herself, has two children under the age of five, and has recently married her childhood sweetheart.

At 24 your life is just unfolding, and dark thoughts about separation from your children should be the last thing on any young mother’s mind.  For a stage 4 cancer patient – this is the stark reality.

Mikalia wrote – “Last night I woke around 1.30 am with an overwhelming amount of sadness, tears rolled down my face and my heart was aching.  I thought about the fact that no matter how much I fight and no matter how desperate I am to survive, chances are my life will be taken from me and I’m going to leave my babies…”   

…and I would give anything to be on this earth with them until I’m old…

“To every mum and dad reading this I want you to know that every single moment whether it be watching your child sleep or picking your child up…or even a tantrum. Those moments we are all guilty of taking for granted – some parents are desperate to be able to do these things, and would do anything to have these moments…”

Today, her heartbroken family face their first day without their precious Mikaila, after her suffering came to an end on March 2, 2020.  The grief they feel today, and will do every day moving forward, is something that can never be fully articulated.  Another young life taken by this cancer, and another family left shattered in sarcoma’s wake.

Today the world is much poorer without you in it Mikaila.  You are truly unforgettable.

“I’m literally willing to try ANYTHING to give me more time on this beautiful earth 🌏 I want to live until I’m old and wrinkly giving cuddles to my grandchildren.

I’m so lucky to have such a supportive family, without these guys I would crumble.I’m so proud of my babies, they have been extra snuggly lately and it melts my heart, princess indie reminds me everyday that I’m the best mummy in the world, it’s hard not being able to do things, watching others doing what I wish I could be doing, I don’t want to be fading away, I want to be up chasing after them, dancing in the rain & making mud pies after a storm.”

– Mikaila Brisbane  – July 7th 2019

To read more about Mikaila’s remarkable life please go to her FaceBook page

https://www.facebook.com/pg/Mikailas-battle-with-Alveolar-soft-part-sarcoma-681071665434190

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A 21st birthday letter


Dear Coops

On this, your 21st birthday, we wanted you to be in no doubt of the immense joy you brought to our lives, and the gratitude we hold for the priceless gifts you have given us during your brief lifetime.

This time 21 years ago, a perfect baby boy entered our world at 8.22am.  This precious baby was you Coops.  You joined your precious big brother, in making our world, our life, complete.

Your arrival was met with the hopes and dreams of the wonderful life that lie ahead.  It is impossible to articulate the pure joy and happiness of that moment.

21 years on, today is a day of extreme sadness, conflicting emotions and stark realisation.  The realisation we are celebrating a milestone birthday without you by our sides.  From the day you and Mitch were born, these special milestones have been so anticipated, so celebrated and so revered.  Your 21st birthday was to be no different.

Today is hollow.  Today is not like any other.  Today is filled with the sadness of the unfinished chapter, when the book is now closed, never to be reopened.  Today is a stark reminder of a wonderful life ending before it began, and what has been senselessly snatched from our family.

The grief of losing you will last forever because our love will last forever.  Losing you was not one finite event, rather, a loss that continues to unfold over the course of a lifetime. Every missed birthday, holiday, milestone, your university graduation, your first job, finding your first love, maybe finding the partner of your dreams, and then there is the notion of the grandchild that might have been.

Then there is your larger than life physical presence that leaves a gaping void.  The empty chair at the table, your empty bedroom, or the empty space in our family pictures that used to once be complete. There is and will always be an empty space in our lives that you once filled.  Time does not make the space less empty. Nothing does nor ever will.

Losing you was the saddest moment ever. The love that exists between a parent and a child is the most powerful of forces, and the love between a bereaved parent and his/her child is a most powerful force of nature.  The love of a brother that misses you every minute of every day, simply cannot be articulated.

We all have the gift of you Coop and the joy you brought to our lives.  You and your big brother remain the best gift in life we will ever hope to receive.

Though you are no longer with us this world, you always remain in our hearts.

Wherever you are today, happy 21st birthday our darling boy.  We miss you more than life itself…