The incredible Molly Croft…

I remember exactly where I was,  the first time I watched a television interview with 13 year old Molly Croft . I was wading through a government proposal for sarcoma funding which was to be submitted to Minister for Health, the Hon Greg Hunt, and I was experiencing severe writers block.  I took a break, and turned the television on, to find a captivating interview with a gorgeous young lady, who had been raising funds for Ronald McDonald House (RMH).  I admit to shedding many tears as I watched this courageous little soul being interviewed like a seasoned professional.  

The interview had already begun, and it seemed I had missed the part of the story which covered the illness that brought Molly to hospital, and her family to RMH.  It wasn’t at all important int he overall scheme of things, however as I watched this courageous and vibrant little girl, with the most infectious smile, a strange feeling came over me.  As the mother of a sarcoma patient, I now find myself with an awareness of others, and I know it did not exist prior to Cooper’s diagnosis.  I had a nagging feeling this innocent little girl, was yet another casualty of this horrendous cancer.  I was not the only one, many people saw that interview and sent me emails and FaceBook messages, and each of them were as concerned as I was.

It was after donating to her outstanding fundraiser,  my worst fears were confirmed.  This little girl had been diagnosed with osteosarcoma.   Needless to say, my writers block was swiftly removed, and a renewed sense of purpose took its place.

Fast forward several weeks, I had the great privilege of meeting Molly and her mum Ange after Molly’s most  recent surgery last week.  I found myself pondering life, and acknowledging that whilst we are all blessed in one way or another, there are many cruel twists and turns – a 13 year old diagnosed with one of the cruelest childhood cancers is something that despite my extensive experience in this area, I struggle with greatly.  

Molly has one very crucial positive on her side during this devastating process, the support of the most cohesive, and loving of families.  Big sister Maddi, dad John and mum Ange, who never leaves Molly’s side.  This has not been easy, as the family live in Dubbo, over 300kms from Sydney, and due to her body’s  rejection of her previous prosthesis, dear little Molly’s leg could not bend, and flying to and from Sydney, was out of the question.  

At this point, it is also important to recognise the Dubbo community who have wrapped their arms around this family, and in spades, showed them, and continue to show the family, the love and the practical support they so need.

Molly yesterday received news of yet another setback, as she learned that she has developed a staph infection whilst in hospital, and will require another week receiving intravenous antibiotics. Every day in hospital marks another day closer to Christmas Day, a time when families traditionally spend time together, and celebrate the year that was. A happy and magical time of the year.  

Molly’s story is a timely reminder to all of us, that for many, this time of the year can and does magnify the pain and suffering of many.  It is also a time when we can look to make a difference, small or large in the lives of those less fortunate.  It doesn’t have to be monetary – random acts of kindness mean the world when you are at your lowest ebb.

Molly, I am rarely lost for words, but I am finding it difficult to find the words to articulate my admiration for you and your beautiful family. You each remind us that when we think we are having a bad day ….we aren’t.  

I would urge you to read mum Ange’s account of the past year, be inspired, and when you have finished, hug your child.  Hug your loved one and remember “…there but for the grace of God go I “- John Bradford.

 A mother’s perspective of her daughter’s sarcoma journey – Ange Croft

When reading Cooper’s journey there are so many parts that seem so similar to our Molly’s journey. From diagnosis, to treatment, to operations and all the other that goes hand in hand with this hideous disease osteosarcoma. But as a mother, nothing seems more similar than the way in which these kids have carried themselves and walked the journey. Moll like I read of Cooper, has held her head high and in fact said from day one “there must be a reason I have to go through this and we will, one step at a time, there is no other option anyway”. And that is what she has done.

Molly was your ordinary sporty, happy go lucky 11-year-old girl. Moll followed in her big sister’s footsteps and played rep netball, hockey and basketball for our home town Dubbo. She was her year six school leader and was lucky enough to have played in the winning state school basketball side only a few weeks before being diagnosed. She played state age netball here in Sydney the week before being diagnosed. Sport was always a big part of our girl’s lives. It’s what they did and it was who they were.

She had had a little niggle in her calve when she played in the Polding basketball side – but nothing to serious or though we thought. And when she came to Sydney to play netball – she played about 18 games over the 3 days. Her leg was sore – her shin was hurting, we assumed shin splints – we strapped it and she played on. By the third day we knew she wasn’t right – but her team needed her and she played on.

On our return to Dubbo we took her that week to the local doctor, got an MRI and by the end of the week and on Molly’s 12 birthday we arrived at the Sydney Children’s Hospital at Westmead to see a doctor for a review. On this day, on her birthday we were told that we were facing something serious – that Moll would go straight into hospital – and within the week Molly was diagnosed with high grade osteosarcoma –  Chemo would be starting straight away and that in approximately 10 weeks Molly would lose most of her tibia, her knee and part of her femur. But before this Molly would have 6 rounds over the next 10 weeks of some of the worst chemo any adult or child can have.

Not only were we told that the chemo would make Molly very sick and that she would lose her beautiful long hair, but we were also told that there was only a 60/40 chance that the treatment would be effective. Moll was also told that she would never be able to play any high-grade level sport again.

Our heads were spinning – how could this be happening to our girl – to our family. But it can in fact happen to any family.

Molly call’s Professor Stewart Kellie (her oncologist) and Doctor Richard Boyle (her leg surgeon) her two supermen. We all agree with her – they are amazing human beings.

Moll worked out early in this journey that the best way to get through this was by looking for a reason to smile every day – even on Molls worst – and although some days were worse than other’s she didn’t miss a day where she didn’t give thanks for something that had made her or us smile. From the other children on a similar journey that she became lifelong friends with, to the starlight captains, clown doctors, or the amazing caring nursing staff or another hundred things that happen within those hospital walls – they always found a reason to smile.

After Molly’s first round of chemo her leg broke right through the tumour – and from then until surgery Molly was in a full leg cast – and every couple of weeks or so the cast had to be taken off and redone.

Before we knew it the 13 weeks were gone – Moll had learnt to rock having no hair, we had mastered sponge baths – she had had her major surgery and the tumour had been removed. She now had her new leg and the scar you can see is her trophy as she will proudly tell you.

It was post-surgery, when the tumour was dissected, that we were given our first idea of how Moll was faring in this battle – and the odds were now looking to be in her favour as she was responding well to treatment and the tumour was pretty much dead.

From here Molly faced another 20 plus weeks of chemo – her body much weaker and recovering still from surgery. Chemo now had to continue to mop up the cancer in any other part of her body. We faced lots of trials, some being the worst of our lives but our girl continued to smile when possible.

Soldier on Molly did – Moll has made friends with nurses and doctors and patients in I think just about every ward in the hospital. On some of Molls darkest days we have met the infectious diseases team, ear nose and throat specialists and became well known to the orthopaedic team too.

Molly was given a piece of string at the beginning of her journey – and was told she would be given a bead for any big thing she had done during her treatment, like a round of chemo, a kidney function test or a scan or physio session – they are now over 6 metres long – and she still has more to add.

On the 9th of April 2019 Molly had her last round of chemo – her treatment, her protocol is done.

When we were running our girls all over the countryside playing sport, teaching them all the values sports teaches you, never did we think that our Molly would be calling on these attributes to help her in such a battle – but she has. Molly has faced this disease with courage, strength, honour and compassion for herself and others. She has been knocked down and she has gotten back up.

Since treatment has finished Moll has had issues with infection and we have seen our courageous girl battle through many more surgeries. In fact, she has only been back at school some 14 days since being diagnosed.

It was not so long ago, one evening when I was putting Molly to bed she said to me “Mum when I was told what I had to go through I thought I’m never going to get through this – but you know what – it hasn’t been that bad – I’ve met some amazing people I will remember forever, people that will be lifelong friends of mine, Mum it really has been ok”. And that’s who our girl is. She may no longer be the netballer or basketballer she was but these also don’t define her or make her who she is. Our Molly will tell you “I now know how loved I am and it’s a beautiful feeling. I am me and I am enough just that way I am”.

Unfortunately, there isn’t a person, child or adult that is ever diagnosed with this disease that doesn’t have to suffer through a similar journey. And it is with this in mind that we can’t thank Cooper and his foundation enough for raising awareness of Sarcoma cancers and putting it out there for further research to be done and hopefully one day finding a cure. So that no family, no one ever, has to walk the path that so many have had to in the past.

When I asked Moll what she would say to someone that has just been diagnosed she replied

  • Although you don’t think you can do this you can. In Australia we have the most amazing doctors, hospitals and so many people here to support you. Research is happening. You are not alone; we are all with you on this journey.
  • If you lose your hair due to treatment, I know you can’t fathom this now but try and own it! When you are having treatment the last thing you will want to do anyway is brush your hair. Those around you, those that love you will be looking right past what you see in the mirror and will be only mesmerised by your courage and strength anyway.
  • No one’s journey is the same. Yes, treatment may be similar but we are all different. There is no one treatment fits all and please remember this. This is your journey and your time to let others help and look after you.
  • Don’t google – although I know, no matter how old you are, in today’s world we all know to google first before anything else! Well please don’t! Anything on the internet is almost definitely old news. The research happening by amazing foundations like Coopers will be way in front of anything you read. Concentrate on things that make you smile, its better for your heart and soul 😊.
  • Your friends won’t forget you – although I was so sure they would! Social media will become your best friend and a gateway to keeping in touch with all those that love you on the days you can’t be with them. And add me! I’m now your new friend too haha.
  • Although you are probably scared and really anxious right now, please try and “look for a reason to smile every day”. Although it feels like a mountain you can’t cross right now – it’s only a bump in the road. You will, we will help you, get through this. And if it’s a bad joke you need on any day to make you smile, I can be your go to girl, I’m really good at bad jokes 😊.

Since finishing treatment Molly has helped raise $185,000 for Ronald McDonald House Westmead and over $21,000 (in partnership with Sydney netball Giants player Amy Parmenter) for the oncology research team at The Sydney Children’s Hospital at Westmead.

http://www.mollysmission.com.au

@thetiedyeproject_

Busselton Ironman We Did It!


Hi All,

We did it…

On the 29th of March 2019, I started my Ironman journey. That run lasted just 4.54km at a pace of 5:53mins/km. In the 225 days between then and now, we’ve put in some work:

  • Total swim distance = 109,111m over 70 swims
  • Total cycle distance = 3,271.8km in the saddle over 132 rides
  • Total run distance = 1,188.9km over the course of 119 runs

The swimming was boring, the cycling was new and time-consuming, and the running was painful, but it had to be done. I think in hindsight, I can confidently say that I was out of my depth. But then again, that was the whole point. To push the barriers of what I believed to be possible.

On December 1st 2019, I completed the Busselton Ironman. The experience of embracing my loving family, as well as my closest friends at the finish line is one I will never forget. I was overcome with emotion and it is the greatest moment of my life. Everyone that was there waiting for me at that finish line made the true sacrifice in dealing with my utter single-mindedness throughout this entire ordeal. Without their support for the whole year, in particular from my beautiful girlfriend Lexie, my loving family Debbie, Sandy, & Annie and Lexie’s parents Cam and Georgy, I could never have made it to the start line, let alone the finish. From the bottom of my heart, thank you.

The Cooper Rice-Brading Foundation entered my life shortly after the start of my training. The foundation gave me purpose, something to remind myself why I was putting myself through this. Tania Rice-Brading is potentially the most dedicated person I have ever met. The moment I first heard from her, I knew that this was the foundation for me. I’m honoured to have ever met you and to have been able to help raise money for this wonderful foundation. I hope that this is just the beginning.

There are so many people to thank for helping me along the journey, I will do my best to list everyone below. If I’ve left you off, please get in touch and let me know!

  • The Busselton supporters; Leixe, Monty, Stu, Cavill, Kirk, Dorms, Luke, Georgia & Mealz. When push came to shove on game day, I needed you and you gave me the will to persevere. I could not have done it without you, thank you.

  • Once again, everyone at the Cooper Rice-Brading Foundation; particularly the Rice-Bradings and Jack Gibson. The commitment to help your special foundation, and the joy and happiness this foundation brought to me throughout the entire year was one of the biggest factors for me completing this journey. I am blessed to have entered the CRBF family. This is just the start! Thank you.
  • My coaches; Hamish Gorman (conditioning), Rebecca Hay (nutrition) and Adam Kable (swimming). You kept me going and focussed when I was getting lazy, thank you.
  • The mechanics who took care of my bikes; David, Ali and Ben at Chainsmith Bikes. As well as Mark at Vanilla Cycles. I could not have come into the race trusting my gear more, thank you
  • For the sponsorship help and advice throughout the journey; David Cobb, Jonathan Pepper, Tyron Bicknell and Ross Bateman. Thank you

If you haven’t already, please visit my donorbox page and donate. We’ve raised more than $15,000 over the course of the year, one final push could get us to nearly double the target I put up when we first started!

https://donorbox.org/jack-s-ironman-for-sarcoma

Over and out from me, thank you all for your support and I hope everyone can take away some message of hope and excitement for every ounce of life, that’s exactly what the Cooper Rice-Brading Foundation is here to achieve.

Jack

The inspirational Fergus McCulla

[video width=”400″ height=”224″ mp4=”https://www.crbf.org.au/wp-content/uploads/2019/10/fergus-cut.mp4

Fergus  McCulla first appeared on our radar in late 2018, due to his raw and factual accounts of his current cancer treatments, which he posted on his Instagram page ‘The real face of cancer”…

We connected via social media, until finally meeting whilst he was undergoing treatment at the Chris O’Brien Lifehouse.

The thing that stuck in my mind after meeting Fergus for the first time, was his bright and sunny demeanour, and a beautiful smile that was ever present, despite what he is forced to relive for a second time.  I have since come to realise the entire family are the same.  Mum Jane, dad Norman, and Fergus’ beautiful sister Anna, have been by his side every step of the way, not once but twice.

Fergus was diagnosed at the age of 7 with Non-Hodgkins Lymphoma in the bowel. He had been experiencing intense abdominal cramping, and the discovery of NHL was only made after having his appendix removed, and a biopsy of my bowel returning as malignant. This is very rare for a child to experience. 

After surgery and chemotherapy, and then receiving the all clear, Fergus went on to live a very normal life post-cancer, but he did understandably suffer mental trauma that had lingered from his sickness as a child, and an underlying worry when he became ill, that his mind would race to the worst conclusions if he experienced any pain in his body.

Fergus had spent several years in bands touring around Australia, and after realising his  lifestyle as a musician wouldn’t support him long-term, he was given the opportunity to work in the family publishing business at the age of 25.  He moved into his own place in 2017, and was loving his career and life was moving along perfectly.

Things changed in the blink of an eye, some 21 years after his first cancer diagnosis, in July of 2018.  Fergus had a growth on his gum, above top left incisor – which he had been monitoring for about a month. He decided to have it looked at, and was prescribed antibiotics to stop infection – which had no effect. After visiting a second GP, being prescribed the same antibiotics and having no results, he then visited his local dentist for root canal – which was unsuccessful as the nerves in his teeth were still very much alive.  He was then referred to a specialist, who took a biopsy from his gum, which came back as benign. As his  situation was unusual, and showing no definitive answers, together with his history of cancer, he was then referred to another specialist. 

Fergus’ results from a second, more invasive biopsy came back, and he was diagnosed with Rhabdomyosarcoma of the maxilla, a rare and very aggressive form of cancer.  As the tumour was in a favourable site, the best option was to immediately resect his upper jaw – gaining a clear margin around the tumour. There was however,  a chance his body may have immunised itself to the drugs he had during chemotherapy earlier in life, and they would have no effect.

Fergus is now  part way through a fibula-flap reconstruction.  Initially his maxilla, along with the tumour were removed, and replaced with a graft taken from his left thigh. This took three surgeries before clear margins were gained around the site of the tumour and the graft took successfully.  He will require dental implants toward the end of this year, then in 2020 he will be doing reconstructive surgery – where his fibula will be taken for a bone graft to recreate his upper left jaw.

Earlier this year Fergus completed 30 sessions of radiotherapy, and is just about to finish a 6 month course of chemotherapy.  Radiation for this cancer requires the patient to wear a mask/plastic mould,  most prefer sedation, as it is terrifying.  and due to the close proximity to the brain, the patient is required to remain very still, under the plastic mould.  Sessions last between 15 and 30 mins each time.

Fergus was very well acquainted with  already the effects, and challenges of chemotherapy, however extensive surgery to the mouth and jaw, has required a lot of adjustment.    No longer being able to eat without a knife and fork, and having to consider things like the texture of food which can be so painful, the size of food, and temperature.  Things that we all take for granted, have now become daily struggles.

Radiation therapy was very difficult for Fergus due to the effects on the head and neck area, which become  extremely painful towards the end of treatment, and the fatigue is overwhelming. The basic process of taking a sip of water could not be done without intense pain, much less eating food or speaking.

The quote below sums up Fergus’ attitude to the appalling hand of cards he has been dealt.

“Although not ideal, and not yet over, things are looking very positive.  It has been a testing experience, but the real gift is life – which I’m incredibly grateful for. I’m also grateful to have the tremendous support of my family, and of so many friends, work colleagues and extended family.”

It is sarcoma patients such as Fergus who remind us that even when we are having a bad day – we aren’t…

A moment in time captured forever…


From the moment I woke this morning, one of my favourite images of Cooper was present in my mind.  The photo portrays a blissfully happy 16 year old with not a care in the world, doing what he loved the most – playing cricket and being with his team mates.

The camera had caught him turning from a team huddle, and unbeknownst to him, he was looking straight down the lens.   He had no opportunity for his hallmark grimaces, threats, screwing up of nose and face, and occasional ‘blue’ word that were forthcoming when he was asked to pose for a shot.  The finished result was a photo our family  will cherish forever.

The innocence, and true simplicity of that shot, was lost on me at the time – I just knew I loved the photo.

How could we have ever predicted the immense significance of this photo?

Less than four months after this photo was taken, Coop’s life changed irreversibly, and his normal teenage existence, became a living nightmare, filled with angst, and pain no-one could possibly understand.  Life for Coop became a daily struggle, whilst he was forced to contemplate his mortality.  He had just turned 17, and the life he had carefully planned, was turned upside down – never to be the same again.

Four years later almost to the month, and the 24th August is again upon us – the day when Coop left our sides forever.  The day when life changed irreversibly for each of us.  The significance of treasured memories like this photo are magnified with the emotion of the day.

The void Coop has left in our lives simply cannot be articulated.  The dull aching pain that will never leave.  The silent tears.  Our hearts broken forever.  Life in a highly altered state. Time does not heal – instead it serves to remind that with each passing day, it is yet another day since we held our precious son/brother – forced to say goodbye far too soon.

We long to turn back the hands of time, but know this is not to be.

Today is a day when we are reminded of what was, and sadly, what should have been.

The photo is a precious reminder of a time which although we couldn’t see it at the time – was so close to perfect.  A time when our boy’s lives were about to take flight.  When the world was at their feet, and like all parents, we could not wait to see where life would take them.

A simple moment in time – captured forever.

Ashley & Georgia friends for life…


During global sarcoma awareness month we are running a series of stories to shine a spotlight on not just the cancer itself, but to highlight the remarkable individuals whose lives have been touched along the way.

I was contacted several months ago by a concerned mother and friend, Annette Supple, whose life had been deeply affected by sarcoma through her daughter Georgia’s best friend, Ashley Thomas, diagnosis with osteosarcoma at the age of 14.

Georgia had expressed to her mum she would like to cut her very long, beautiful hair to donate to a charity so it may be used to potentially lift a cancer patient’s spirits, and to raise money for sarcoma research in the process.

At 14 a cancer diagnosis represents the unthinkable. For the family and particularly and close friends of these young patients, growing up quickly is part of the process whilst providing support throughout diagnosis and treatment. For most 14 year olds, the biggest question of the day is what to wear? Yet Ashley and Georgia live amidst an unspeakably difficult process not many could ever begin to imagine. For this reason Georgia’s gesture was as unexpected as it was humbling.

Whilst Ashley is now fully recovered from surgery, Georgia will remain by her side to provide support and strength to her friend, throughout the months of chemotherapy which lie ahead.

Georgie Supple – In her own words…

When Ashley was diagnosed with osteosarcoma just after Christmas last year I felt helpless and confused. We had been friends since the day she was born, had all our first days of school together since preschool, and I was devastated to not be able to continue that tradition.

A few weeks into Ashley’s chemo, her hair started falling out, first a few strands, then small chunks, then what looked like a whole head of hair. It was hard to watch as she had always loved her hair and it was a part of her. My mum shaved Ashley’s head in hospital one Friday night. It was very hard for me to watch. I felt as though I needed to show her that losing her hair wouldn’t change who she was.

I considered shaving my head for a while, but then decided it would be best to cut off enough to donate to a wig making company. It will be made into a wig for someone, probably another child, who has lost their hair too. I looked around and found one where I could donate anywhere above 25 cm of hair. Through doing this I raised $350 and gave Ashley the confidence to feel beautiful even without her hair.

She is beautiful, she is my best friend, and she is a fighter.

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City2Surf 2019 – Sydney


With a month to go, the Cooper Rice-Brading Foundation City to Surf team will once more spill onto William St, making their way onto New South Head Road, on the 14 km road to ‘Cure Sarcoma’.  

Register before 24th July and receive a $10 discount! It’s a two step process:

1. Register for the City2Surf 2019

Register for City2Surf 2019 at https://city2surf.com.au/

  • Join the TEAM “Coops Sprint for Sarcoma” as you register
  • Do NOT select a charity partner as you register for the event

2. Create a Fund-Raiser Page to Raise Funds for Cooper Rice-Brading Foundation

Go to https://city2surf2019.everydayhero.com/au/get-started

  1. Enter Your Page Title
  2. From the list of Charities select “Cooper Rice-Brading Foundation” – VERY IMPORTANT!!!
  3. Enter the remainder of details for the page
  4. Create Your Page
  5. Once page created select button on right to “Join an existing team”
  6. Search for Coops Sprint for Sarcoma
  7. Select “Join this Team”

Share your page with all friends and family through social media and email, and ask them to help us continue Cooper’s legacy to raise money for sarcoma research!

The English Channel Swim launches…

Matthew & Chris Watson with friend Sam Gilbert

The Watson family are impressive by any standards.  Professor John Watson is an eminent Sydney Neurologist, Senior Vice Dean of the UNSW Medical Faculty, and a former Rhodes Scholar, who now is the Deputy National Secretary for the Rhodes Scholarships in Australia.  His wife Julieanne is not only a very busy mother of four, but she holds an array of impressive qualifications which sees her professional life working with the Australiana Fund, preserving and acquiring a permanent collection of Australian artworks, which furnishes the official residences occupied by the Governor General and Prime Minister of Australia. When they are not devoting time to their four sons, and their respective careers, they are helping others in a multitude of ways.  Their reputation for giving is well recognised amongst those who know them well.

Family is everything to John and Julieanne, and it is hardly surprising this power couple have produced four boys who are carbon copies of their parents.  Matt 29, Chris 26, Tim 22 and Peter 16, are each already making their mark on the world, and they too have been taught the value of hard work, giving back, and being the best version of yourself.

Our family has known the Watsons for over a decade, due to friendships formed between our sons at Sydney Grammar School.  Our eldest son Mitch, and Tim Watson have been the closest of friends for many years. When Cooper was diagnosed with osteosarcoma, the family were the first to offer anything and everything to make life easier for him, and for us.  Put simply, they are the friends you need to have when your world is crumbling around you.

In 2016, Chris Watson offered to tutor Coop for HSC, whilst in hospital.  He was in Year Eleven and the rigours of chemotherapy made study very difficult.  Chris was instrumental in devising ways Coop could continue study, without overtaxing him, and allowing him to keep up with HSC commitments.  Nothing was ever any trouble to Chris. The sad reality was, Coop was in a state of decline, and study eventually took a back seat to survival.

In November of 2018, I was overseas and received a most unexpected text message from Chris, who is studying a Masters in Genetic Research, advising me of his intention to swim the English Channel, with brother Matt and their lovely friend Sam Gilbert.   The three young men, who are all working in, or studying medicine and science, had under their own volition, opted to undertake this gruelling swim, and direct funds raised from the swim, to the Poche Centre for Indigenous Health where Matt and Chris have helped as volunteers and participated in fly-in fly-out clinics to remote communities, and to our very own CRBF.  Not surprisingly the rest of the Watson family also volunteer with the Poche Centre, with Tim . We were totally humbled by the gesture.

By means of background…

Matt Watson is 28 and currently working as a Resident at the Fiona Stanley Hospital in Perth, and has a strong interest in Indigenous Health issues, having done fly-in fly-out clinics with the Poche centre.  Matt studied a Bachelor of Commerce, and then MB BS at USyd, and is marrying his wonderful fiancee Sofie next month.

Sam Gilbert, 27 is currently working for biomedical engineering company, developing products with the hope of helping spinal injury patients to regain more function than currently possible.  Sam studied a Bachelor of Engineering Honours (Biomedical) at USyd, and is also a wicked chef.

Chris Watson, 26 is currently doing an MPhil, doing research toward treating genetic diseases of the brain at the Children’s Hospital Westmead, and will complete his medical course, an MD at USyd in 2019.  Chris also studied a Bachelor of Science, with an Honours year and the University Medal in neuroscience.

On February 2nd this year, the English Channel Swim was officially launched at a superb event in the magnificent gardens of the Watson family home, complete with magnificent catering, and a superb jazz band with music provided by Will McInnes, Rob Christian, Sam Rochlin and Ben Daniel.  Over 100 guests gathered to lend their support to these outstanding young men, who are preparing for the gruelling swim in July.

The Channel is a swim of about 44 km that can vary wildly depending on tides and conditions. The boys expect to take around 13 hours non-stop, and are currently training 10-12 hours per week, on top of their gruelling work and study schedules.   Apart from the 16-degree water of the English Channel, other challenges include negotiating sewage, freight ships in one of the world’s busiest waterway, and stinging jellyfish.

We at CRBF sincerely thank Sam, Chris and Matt for their generosity of spirit, and their thoughtfulness, and we wish them a safe and healthy passage throughout their swim.

TO DONATE – PLEASE GO TO THE LINKS BELOW

https://crowdfunding.sydney.edu.au/project/13264  –

The Poche Centre for Indigenous Health at the University of Sydney was established and funded in 2008 by philanthropists Greg Poche AO, Kay Van Norton Poche and their friend Reg Richardson AM.

The Poche Indigenous Health Network was created in Australia to make the most of the efforts and resources of the individual Poche Centres for Indigenous Health and to focus on issues best dealt with at a national level.

The Cooper Rice-Brading Foundation link may be found be going to:

https://give.everydayhero.com/au/english-channel-swim-

Our new Patient Ambassadors


Imogen Atkins

After going through 8 months of chemo, and a 5 hour life and limb saving surgery it is amazing to be able to be back doing more normal things.  I still face regular check ups, and have only recently finished tougher 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 and Uni. I successfully completed my final year of school with a highly sought after OP 8, despite many people suggesting I, a) repeat year 11, and b) to go down the path of getting a Rank instead. This year I am starting my Bachelor of Wildlife Science and hope to end up in conservation work. 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, in my final year of school I once again competed in the BSRA competition as part of a crew who came first at the Head of the River Regatta. But it is honestly just 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 learnt and continue to learn how to snowboard, and even when on my Year 12 Snowy trip in September 2018. 

I have done a range of things both in my normal life and my cancer life. Normal: I travelled to London and Finland with my family, I was a Bridesmaid at my sister’s wedding, and I became a Volunteer at Australia Zoo. Cancer: I presented at and sat on a panel of people at a Medical Conference. I have attended Bissy4Ward and Warf4Ward hosted Sony You Can Foundation.

But I’ve also lost two friends to Sarcoma and everyday I’m concerned I’ll loss another so in my life of remission I fight not just for myself but for them. I hope to be in that too small percent that survive so that I can live not just for myself but for them.

That is why I am now an Ambassador of the CRBF and hope that I can help find a way and be voice to make those percentages bigger.

Charlii Croese

 

I was diagnosed with osteosarcoma in my left femur on 29th of February 2016 I was 16 years old. For two months, I was missed diagnosed, I was firstly told I had a torn hamstring then I was told I had torn my ACL. Finally, after two months of horrific pain I finally received the scans we had been asking for. I was walking on a completely broken femur for two months and not even realising.

Being told you have cancer at the age of 16 is an absolute nightmare sitting in the doctor’s room and to hear those words shattered my heart into a million pieces my world was taken from me within a blink of an eye. At the age of 16 you’re just going into year 11 working out if you want to go to university and what you want to do for the rest of your life. Well not for kids like cooper and I for us it was being in a room with chemotherapy running feeling sick struggling to keep any food or drink down barely being able to have a shower and go to the toilets on certain days.

Crying in your bed just wishing for the pain and sickness you feel in your stomach for days on end to just go away. And on your good days spending it in your bed just watching television and enjoying not staring at those same 4 walls in your hospital room and having the company of your family and pets around.

Throughout my journey I struggled with seeing everyone around me move on with their life and mine just stood still. I wasn’t normal compared to all my friends. I lost many other cancer patients that I met throughout my journey and I felt so guilty to still be here without them. They became my family we understood what each other were going through. Many of my friends couldn’t deal with me being sick so they stopped speaking to me and would ignore me. I never held a grudge everyone deals with an illness in different ways. 

I just started to focus on myself and my health. My health was the most important thing while going through treatment. My family and my best friend were my rock I have the most amazing positive support group I’m so blessed to have such an amazing group of people whom support me.

Still ’til this day whenever I get any ache or pain in my body I always think the worst. Each day I always have a moment during the day that I think about my journey I still struggle everyday with what I’ve been through and how many people I’ve lost. Every day I just tell myself I’m a fighter and to be positive and take every day as it comes. Mum always said to me every day while I was battling cancer take it one day at a time and till this day it is exactly what I do.

Now two years in remission my life couldn’t be more amazing I just live each moment like it’s the last. The past 6 months we had some ups and downs my oncologist thought my cancer had come back and to hear it hadn’t was music to my ears I pray every day my cancer never comes back in the future. 

I’m completely over the moon, I’ve had the honour to become an ambassador of the Cooper Rice-Brading Foundation to be asked has made my heart so full I feel so privileged to be a part of such an amazing foundation there is nothing else I would rather do.

It’s time to raise awareness for Sarcoma we can do it together we can save someone else’s life and we will.

 

How do we begin to thank you?

Tuesday 22nd January, 2019  saw CRBF host the second T20 Birthday Bash at Trumper Park Oval, Paddington.  This event was incepted in 2018, by Coop’s friend and representative team mate, Will Todd.  Will, together with his family, mum Robin, dad James, and brother Tommy, worked so hard once again this year, to ensure the outstanding success of the event.  We are indebted to the Todd family for their ongoing commitment to this event, together with their love and support.

The oval was prepared to perfection for the event, and we would like to thank the Trumper Park Groundsman, Guy, who painstakingly prepared the wicket.  We were privileged to be the first hirers of the newly refurbished canteen, which withstood its first big test, with flying colours.  Our thanks are extended to Kim from Woollahra Council, for assisting us with the entire ground hire process, and the Council for waiving the ground hire fee.

A sell-out crowd once again witnessed a quality game where the CRBF All Stars were very unlucky not to take the bat home this year, going down narrowly to the CRBF 1st X1.

Man of the match was Will Simpson, with runners up, Cameron McLean, and Will Mallett.  We thank each of the thirty amazing young men for giving up their day, to participate in this very special event.

Below are the match reports from Mitch Rice-Brading and Will Todd.

-Mitchell Rice-Brading-

 The second annual CRBF T20 Bash, saw the CRBF 1st XI  looking to defend their title against the CRBF All Stars. After winning the toss and electing to bowl, the CRBF XI got off to flyer, especially Robin Evans, who was literally flying as he plucked a one handed screamer at square leg. Reeling at six for not many, after Will Mallett had run through the top order, Will Simpson entered the crease, and was kindly greeted by his whipping boy Steve Salakas. Simpson went about quickly rebuilding the innings, dispatching Salakas to all parts on his way to a finely constructed 80. As the tail rallied, the All Stars were able to put 172 on the board, a very competitive total considering their start.

The CRBF XI got off to a shaky start, losing Evans in the first over, but before long Isaac Crawford and Cameron Mclean were moving along beautifully at the crease. Quick singles and twos were few and far to come by, however this was masked by the destructive boundary hitting of both boys. After Crawford fell, Baxter Holt came to the crease and maintained the rage, including one remarkable switch hit which cleared the boundary by 30 metres. The contributions of these 3 boys saw the CRBF XI cruise to victory in the 17th over, and holding on to the bat for another year.

We know Coops is smiling down on us proudly as we honour his legacy in the most appropriate manner possible.

-Will Todd-

Winning the toss, the CRBF All Stars set out to score a big total. It was all the CRBF XI early with Will Mallett and Alec Sheldon tearing up the All Stars top order. Will Lawrence and Tom Miller looked eager to get the all stars back on track before they were both dismissed just shy of 20. Will Simpson proved to be the remedy for the All Stars, and simply too good for the CRBF XI, blasting an important 80 runs. Simpson cleared the rope all around the ground and with both hands! An extremely valuable 30 from Harry Crawford led the All Stars to a final total just shy of 180.

With a big total on the board Charlie Hooke wound back the clock with a fantastic opening spell, dismissing the dangerous Robin Evans in the first over. However, a huge first wicket partnership put the CRBF XI in the box seat. The All Stars fought back with two quick wickets providing some hope. However, a fiery 40 from Baxter Holt sealed the CRBF XI’s second victory in consecutive years.

The CRBF XI again proved to be too good for the All Stars.

As with the year prior, the day was another overwhelming success, and our family are truly touched by the generosity of all those who attended.  The  atmosphere in the stands was electric, and made for a fantastic vibe both on and off the ground.  On a day every year, that is an extremely difficult one for our  family, we are so humbled by the willingness of those attending, to make it a special day.

We could not conduct an event like this without our magnificent volunteers.  I could literally write all day and I would still be unable to adequately thank these remarkable individuals:

Kate Longden, Libby Patterson, Keith Cox, Tim, Gloria & Josh Gapes, Michael Furlong, Mitchell Rice-Brading, Emma Duncan and photographer Sorabh Arya who was also responsible for erecting marquees and everything in between,  all deserve a special mention for their staying power on a very hot day.  All starting between 11am and 12 midday and there until the end of the day.  Thank you really does not seem to cover our gratitude to each of you.

Joining these remarkable individuals were brothers Oscar and Hugo Patterson with a group of young friends who I am sure would have better things to do on a very hot day, but who worked so hard to prepare the exterior.  We thank them all so very much, together with our Chairman Robert Beech Jones, who put on an apron and worked for hours on the barbecue, producing some fine cooking in the process, Luke Bennett for set up, Chris Nicol, Michael Comino, Ani Joshi, and Toby Debelak in the bar, our umpires Martin Rossleigh and James Todd,  George Foley and Alexander Magiros who kept an close eye on everything around the ground, Josh & Alison Craig together with Gillian Sloane, who greeted our guests and stamped our over 18s, and Graham Nicol on barbecue.

We also extend our thanks to Kirsten Martenssen and Nikki Yeaman for their outstanding work in selling our raffle tickets, Lilah Critchley-Isherwood and Fiona Beith for their help with food prep, and Peter Salakas and Mitch Rice-Brading for a highly entertaining four-hour stint at the microphone.

An event such as this would not be possible without our commercial partners and sponsors.  We thank the following individuals and businesses for their generosity:

Mr Graham McDonald  & Cooper’s Brewery

Mr Mark Swadling – Pontoon, Darling Harbour

Ms Nikki Yeaman – Costume Box

Mr and Mrs D Mallett

Ms Kate Longden and the Roche family

The Royal Hotels  Group

Ms Louise Lorkin – Director, Albion Sports

Kim Solman – Woollahra Council

Woollahra Council

Easts Bulldogs Junior AFL

Easts Cricket Club

Brendan Hilferty – The Winepoint

Nguyen Bakery – Bondi Road

Clovelly Village Butchery

Ben Ralph & Dell Yates – All Size Miracles

Steph Hanna – Ties and Cuffs

Coles Supermarkets

Our final thanks goes to each of our supporters.  You purchased raffle tickets, tickets to the game, food and beverage, and proved to once again be the perfect group of spectators on the day.

More significantly to our family,  you once again wrapped your arms around our family on a day when we needed it most.

CRBF 1ST X1                                                 CRBF All Stars

Jack Gibson – CaptainWill Todd – Captain
Cam McLean- Vice CaptainFionn Geraghty  – Vice Captain
Robin EvansTom Chichester
Baxter HoltHarry Crawford
Sam IsherwoodJoe Bonic
Joe MackieMax Bonic
Will MallettCharlie Hooke
David RobinsonWill Lawrance
Stephen SalakasGus McGrath
Alec SheldonTom Miller
Marcus ShownirukXavier Roche
Will YeamanMax Patterson
 Tommy Scribner
 Will Simpson

2018 – It’s a wrap…. (Review)


Hi everyone

We hope each of you had a lovely Festive Season, and the coming New Year is a healthy, happy and safe one for you and for your family.

With 22 January fast approaching, we want to remind you tickets are selling fast to the CRBF T20 Birthday Bash, with gates opening at 2 pm.  The tickets have remained at $20 per person which includes barbecue and entry.  Food and beverages will be on sale throughout in strict accordance with RSA guidelines.  All persons purchasing alcohol must be 18 years or over, and provide identification if required.

Entry is by pre purchased tickets.  Go to TryBooking

https://www.trybooking.com/book/event?eid=458934

Funds raised in 2018

CRBF directors and our Medical Advisory Board unanimously voted to reinvest the funds raised by our hosted events, together with the extreme generosity of our major individual donors. At present we are in a consultative phase with research specialists, and leaders in the field of sarcoma, to establish where this significant amount of funding should be directed.  As was Cooper’s vision, all funding will be directed to where it will have the most impetus – to positively change survival outcomes for sarcoma patients.

Farewell to our Chairman

When Jeremy Sutcliffe joined us as Chairman in 2018, we were aware his tenure would come to an end in 2019, due to his planned relocation to Europe for the year with his family.

Jeremy has provided a very strong start to our aims to positively change survival outcomes and treatment options for sarcoma patients.  Through his wealth of expertise in the boardroom, as both an ASX 100 company chairman and as a seasoned company director.  His strong passion for cause and personal experience with this cancer, has contributed to the

We wish to extend our heartfelt thanks to Jeremy for his belief in the work we are undertaking, and for the personal and professional qualities he brought to the role of Chairman.

We wish Jeremy and Catherine a safe, happy and healthy time overseas, making wonderful memories with their family.

Welcome to our new Chairman

CRBF would like to extend a very warm welcome to Justice Robert Beech-Jones, who will succeed Jeremy Sutcliffe, as our Chairman, effective immediately.

Robert brings a wealth of diverse experience to the role with proven leadership ability, experience at Board level and more significantly, in the not for profit sector,  together with his very strong personal passion for cause, which is driven by his long association with Cooper through junior AFL.

To read more about Robert’s distinguished career, please visit our Board page at www.crbf.org.au.

Below an overview of CRBF’s first eleven months as a registered Australian charity, to provide you with a summary of what we have achieved to date, and our direction heading into 2019: 

ACNC Registration

On Cooper’s birthday, January 22, 2018, our application for ACNC registration, and DGR status was approved, and the Cooper Rice-Brading Foundation became a registered Australian charity.  This was bittersweet, as it was Cooper’s long-held aim to gain independence as a charitable entity, and was therefore tinged with immense sadness when he was unable to see it come into fruition.

 Inaugural T20 Birthday Bash

Cooper’s long-time friend, and representative team mate, Will Todd, incepted the idea to host a cricket match on Cooper’s birthday, 2018, to pay homage to Cooper’s passion for cricket, and enabling the players, all from his days of school and representative cricket, commemorate the day while reliving memories from the past decade.

While the event was not designed as a fundraiser, sarcoma research benefitted from the  $5000 it generated on the day, with special thanks to the Todd family, the players and volunteers who gave up their day,  to Australian cricketer Nathan Lyon for his time and effort together with his manager, Peter Lovitt from the Drive Avenue Group, and to our partners, Costume Box, Coopers, Ties and Cuffs and Easts Cricket Club. The match was a huge success with the CRBF 1st X1 narrowly taking victory over the CRBF All Stars.   22 January, 2019 will see the second match played at Trumper Park.Oval, starting at 3 pm. A strictly limited number of tickets available at TryBooking – or by pressing the link below:

Mother’s Day Breakfast  

Hosted by the dynamic Mia Freedman, this event was held on Friday 11 May, 2018, at Zest Waterside Venues, RMYC Point Piper.  The breakfast was an outstanding success, raising in excess of $30,000 for clinical research for sarcoma.    Due to its popularity, the event will be conducted once again in 2019.  Our sincere thanks to major partners Glasshouse Fragrances, Dior, Zest Waterside Venues and Taylors Wines.

Robert Hao Piano Recital

Rob Hao very kindly dedicated his farewell performance to the Cooper Rice-Brading Foundation, prior to leaving to study an undergraduate Bachelor of Music, at the Royal College of Music in London.  Rob kept the audience spellbound with works from Chopin, Bach and Alban Berg, finishing with an early Beethoven sonata.  His immense talent and passion for music raised over $2000 to provide hope for young sarcoma patients, and we extend our heartfelt thanks to Rob for his kindness and generosity.

City To Surf

The Foundation’s first City to Surf proved to be highly successful both from an awareness and fundraising perspective.  Thanks to the efforts of radio hosts Fitzy and Wippa together with NOVA 96.9, our campaign reached a national audience, and the CRBF team raised $20,000 as a result.  The event also saw the release of our Stamp out Sarcoma merchandise, and caps, socks together with the “Run for Coops” t-shirts saw our team stand out for all the right reasons during the race.  Our thanks go to Fitzy and Wippa, Nova FM, and Upcycle studio for their part in ensuring the campaign was an enormous success, together with the generosity of our sponsors.

Autore Pearls – “The Cooper”

Autore Pearls are synonymous with quality, and exquisite design, with their designs worn by Angelina Jolie, Halle Berry, Sarah Jessica Parker, and Selena Gomez, to name but a few.

The Cooper has been designed by AUTORE Design Director, Jane Autore, to embody the spirit, and the life of our precious son, whilst generating funding for critical clinical research by donating 10% of each sale directly to CRBF.

This is a unisex piece, with a magnificent Italian leather plaited band, an exquisite South Sea pearl, customised clasp with the CRBF logo, and a small garnet detail to signify Coops love of cricket.  The bracelet is available in a double and single strand.

Our heartfelt gratitude to the Autore family, for creating this spectacular piece, and for their support of the work of CRBF.

SGS Trivia Evening

2017 saw the inaugural Sydney Grammar School trivia evening, with proceeds directed to CRBF.  This was incepted by Senior Housemaster Mr Jason Slater, and supported by the form v1 boys.   Sadly, Cooper was too unwell to attend, however was so very touched by the sentiment, as he would have been this year when the second trivia event was held, returning $1600 to clinical research into sarcoma.

Our sincere thanks to Mr Slater, together with Headmaster, Dr Richard Malpass, Masters and students for contributing to the success of this event.

Legends of League Chairman’s Dinner

The 11th September saw CRBF chairman, Jeremy Sutcliffe, host the Legends of League dinner, NRL Museum, NRL HQ.  The league legends including Braith Anasta, Brad Fittler, Steve Blocker Roach, Wayne Pearce, Daly Cherry-Evans, Anthony Minichiello, Steve Edge and Michael Ennis dined with invited guests and share highly entertaining stories of their illustrious playing careers.

The evening was a resounding success returning $37,000 for clinical research into sarcoma, and our heartfelt thanks goes to the NRL commission, Todd Greenberg, Peter Beattie, Rachel Kramer and the NRL staff, together with host Anthony Maroon, and partners for the event, Serena Sanderson Catering and Dianna Jaber, director of Take Me, designer tableware.

The Griffith region NSW community fundraiser – Tayla Zandona

Tayla Zandona is a remarkable young woman who knows the heartache of sarcoma first hand, losing her big brother Kyle to this cancer on Christmas Day, 2016.

Despite the grief that never subsides, Tayla staged simultaneous events in the Griffith/Yenda region, to raise in excess of $4000 in an effort to ensure no other family ever go through the heartache she and her family live with daily.  We will be working closely with Tayla this year in support of a very large event in this region.  Having lost five members of the local community to sarcoma, this region is very committed to assisting the funding of sarcoma research, and we look very forward to working with this extremely generous group of individuals over the coming months.

We extend our heartfelt thanks to Tayla for her generosity of spirit.  No-one can truly begin to understand the devastation of this cancer until you have witnessed a loved one fight so hard to conquer it – making her efforts truly inspiring.

Thank you

We would like to thank each of you, our donors, supporters, volunteers, directors and our executive committee members for the tireless work and support we have received throughout our first year as a registered charity.

Special thanks to the following donors for their outstanding support.