The saddest of goodbyes to an unforgettable young woman…

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 letter to Coop on his 21st birthday


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…

 

 

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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Meet 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_

Final Ironman Blog – 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

Meet the truly inspirational Fergus McCulla

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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…

Opening address – ANZSA Scientific Conference 2019


The Australia New Zealand Sarcoma Association annual scientific meeting was held in Canberra on 11th and 12th of October, bringing together a collection of the most stellar medical and scientific minds, all working toward a cure for sarcoma.

The conference showcased the ground breaking developments in research which will and in some cases are, of benefit to sarcoma patients globally, thus providing untold hope for the future.

It was an enormous privilege for our own Mitchell Rice-Brading to open the conference, with a passionate and heartfelt speech which was central to his own experiences of losing his younger brother Cooper, to sarcoma.

 

Transcript below:

 

My name is Mitchell Rice-Brading, and I am the brother of the young man whose name our Foundation proudly bears.

I would like to begin today by extending my deepest gratitude to ANZSA, and in particular, Dr Denise Caruso, for having me speak this morning, and I would like to impress the great privilege that I personally attach to the opportunity.

I’d also like to acknowledge the work that goes into both organising an event of this magnitude, and to making the effort to attend. As a recently graduated uni student, I am currently working 20 hours a week as a bartender.  I have just returned from the World Cup in Japan, and has another trip planned to Thailand at the end of the month, I can empathise with all of you in the room. We’ve all made sacrifices to be here today.

On a more serious note, my family and I find ourselves as incidental members of the greater sarcoma community.  It was unplanned, and unexpected. Unlike us, most of you in this room have chosen to devote your time working to improve the plight of those touched by a sarcoma diagnosis. We are humbled by the selflessness of choosing such a career path.

We have come to realise, that with the heartache and devastation that is a sarcoma diagnosis, it has also become the driving force for what ultimately brings us here today, motivated to instigate critical and positive change.

The gravity of losing my brother to this cancer is something I find difficult to articulate.  I can never see a day when the senseless loss of Cooper’s life will be something I can rationalise. Tragically, my brother became one of the many real faces of sarcoma, and now I am all too aware of what sarcoma represents, and why conferences such as this, are yet another crucial step forward.

Because, for all the scientific complexities, there is one unavoidable constant that follows a sarcoma diagnosis –  pure devastation.

Walking the road beside Cooper, I felt helpless. Sleepless nights pondering the future; The ever- present guilt because I was not the one afflicted; and the unwavering desire to say and do the right things to provide comfort, but ultimately feeling like nothing was ever enough.

And then there was the soul-crushing final act, helplessly witnessing the brother I grew up with, regress into a mere shell of his larger than life self, when treatment options were exhausted. Sadly, this an all too regular outcome for young sarcoma patients.

Nonetheless, my family were left with a choice: Sit on our hands and do nothing, or perpetuate Cooper’s memory and his vision, by joining with the remarkable group before me, and make a contribution no matter how small.

It is of note that as recently as three and a half years ago, when Cooper was first diagnosed with osteosarcoma, treatment options were severely limited. This, of course, was no reflection on his stellar medical team – it is simply the way it was.

Similarly, a body of up to date, reliable, and user friendly information for patients and their families proved impossible to source. In our family, and I suspect in others, we introduced one policy: No Internet. The information that presented itself after one google search was astoundingly outdated, and generally soul-crushing for a recently diagnosed 17 year old boy.

Compounding this, was the fact adolescent patients were, and are, routinely treated in adult facilities, some barely past the age of 14. I dare say it won’t shock you to know, the needs of a teenage boy are vastly different to those of a 70 year old man.

Just over three years later, and the positive change is palpable. The emergence of future adolescent sarcoma centres, such as the one proposed for Chris O’Brien Lifehouse; dedicated sarcoma nurses helping patients through the medical minefield; imminent clinical trials for a number of sarcoma sub-types; cutting edge genomic sequencing programmes and trials; peer reviewed studies published in significant medical journals – the list goes on…

This, together with the highly credible and relevant information available on the new ANZSA website, has indeed removed a lot of angst out of those first weeks post-diagnosis. The change is visible and there for all of us to see, and is largely attributed to the persistent work of a number of those in the room today.

We are truly privileged to be working with some of the most distinguished clinicians and scientific researchers in this field. Then there are those who are driven by tragedy, who work tirelessly for change, and have created the most outstanding legacies to the loved ones they have lost, through fundraising and awareness campaigns.

I look around this room, and it is difficult not to be humbled and somewhat moved.  You inspire us as the relative new kids on the block, to adopt the patience, resilience and determination you have all shown over many years. They say Rome wasn’t built in a day, and nor will sarcoma be cured in a day, and it is these qualities in each of us, which will ultimately lead to critical advancements.

I don’t necessarily have what it takes to be a medical oncologist, nor have the deep biological knowledge required for meaningful research. But all of us in the room today are fighting sarcoma as a team, and all players in a team have a role.  At the Cooper Rice-Brading Foundation, our role is clear: to assist in facilitating your work, and to support you in future initiatives. And when we look at the progress we’ve already made, it is simply difficult not to be inspired, and to push through on the difficult days.

From all of us at CRBF, we extend our deepest gratitude to each of you for the outstanding work you continue to accomplish in this field, and for openly accepting us as a small part of this stellar team.

All of us here today are aspiring to make sarcoma history, and we’re not giving in.

 

 

 

Ironman 04/09/2019 Update


A massive last week of training and fundraising!

With the help of CRBF and the generous support of the Forest Lodge Hotel, we hosted a Trivia Night last Thursday to continue the fundraising for the foundation. A few highlights from the evening:

  • 1st Place = Racklyefts (I’m told that a few members of the team carried my dad in this team)
  • Most Table Donations = The Prancers with the Answers (nearly $300 donated)
  • Best Name = 50 Shades of Spay

The generosity on the night was tremendous. I cannot thank everyone enough for coming along to support such an amazing cause. A special thank you to Fitzy & Wippa, Dr Chris Brown, Hamish Blake, Jack Maddocks, Paul Roos & the Sydney Swans for their celebrity questions! In total, we raised $2,032.00 on the night which is going straight towards research into sarcoma! Well done to everyone and thank you so much once again!

The fundraising effort is now up to more than $10,000. The support has been unbelievable and with 3 months still till the event, there’s plenty of opportunity to keep growing that number further!

Thank you!

 TRAINING:

Training-wise, a slight tweak in my lower back held back my routine for the weekend frustratingly. However the training during the week was solid, with just under 10 hours of work done.

It was an exciting week in sign-ups however! I signed up to a couple of triathlons and an open water swim which really confirmed how close we are getting to the actual event!

  • 19th October – Forster Triathlon (2km swim, 60km cycle, 15km run)
  • 26th October – Husky Big Swim (5km swim)
  • 3rd November – Huskisson Triathlon (1.5km swim, 40km cycle, 10km run)

Three weekends in a row of triathlons/big swims will be the perfect trial runs for the actual event. It will be the perfect way to practice my transitions and swimming in the big pack! Keen!

Next week I’ll lock in the actual event!

13 weeks until game day!

 

As always, if you have any suggestions or ideas to help raise awareness for sarcoma research and/or the work CRBF do, please shoot me a message on social media or via email (jack.racklyeft@gmail.com). Please share this, or any information from my donation page below to anyone and everyone you can. I have no doubt that slowly but surely, we will start to raise awareness and to make a truly positive change:

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

Ironman 27/08/19 Update


Happy Tuesday everyone,

A big week for training. Some hard, fast runs, as well as a great Sunday cycle and two big swims made it one of my biggest thus far.

I also met up with one of Colin Rice-Brading’s good friends Ross Bateman, who’s extremely well-versed in the triathlon experience. We met during the week and discussed his tips and suggestions based on my training thus far. This kind of inside info is extreeemely important and I can’t thank you enough Ross! I’ll be in touch soon no doubt!

CYCLING:

Nothing too special to report

Completed a 95km ride on Sunday in good time (averaging 32km/h around the loop). My speed was good and consistent for the whole duration which is extremely positive. The Centennial Park loop will be getting a serious workout for the remainder of my training weeks going forward I suspect! Stu joined for the first hour and a bit, which always makes the ride more do-able. The last couple of hours were difficult but when I upped my carb intake I found my performance really improved.

 

RUNNING:

Completed lots of 10km runs this week, topped off with an extremely difficult 15km run on Friday afternoon around the hills of Lexie’s Mackerel Beach place. The first 3km went up 180m in elevation, resulting in 360m of elevation gained for the entire run! To put that in perspective, the ENTIRE ironman race run over 42km will only gain around 200m of elevation!

It was great to do this run though as it really tested me mentally as I was shattered within the first 3km. I had to endure for the rest of the run, whilst still encountering numerous big hills. Overall it was a really tough workout and another good one in the books

SWIMMING:

Once again completed two swimming sessions, but this time they were 2200m and 2500m, both in great time.

Felt far more motivated to do the swims which really helped. I’m feeling like I could continue swimming on indefinitely after all these which is a great sign. Still definitely need to get out in the open water, but without a wetsuit it’s just not do-able at this stage!

 

14 weeks til game day! Coming in quicker and quicker. Another big week ahead, followed by a “rest” week where I’ll go at about 75%!

 

As always, if you have any suggestions or ideas to help raise awareness for sarcoma research and/or the work CRBF do, please shoot me a message on social media or via email (jack.racklyeft@gmail.com). Please share this, or any information from my donation page below to anyone and everyone you can. I have no doubt that slowly but surely, we will start to raise awareness and to make a truly positive change:

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

A simple 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.