3 young men & a very special childhood friendship

A very special childhood friendship

 

After a valiant three year battle against a Rhabdomyosarcoma,Tom Hulston and Rob Stein’s childhood friend Fergus McCulla, tragically passed away last month at the age of 31.

A life tragically taken too soon by this devastating disease.

Tom and Rob considered themselves to be the lucky ones to have spent some of the best moments of their lives creating wonderful memories with Fergus from the time they met at Barker College Junior School over 20 years ago.

“Fergus suffered through three years of extremely invasive surgeries, oppressive chemotherapy regimens and exhausting radiation treatments, but in a true testament to his character, he never lost his sense of humour and kindness to other people. He was always going out of his way to make sure others were ok and never once complained about the unspeakably difficult time he was going through”, Tom and Rob recently wrote.

On the 19th of September, Rob and Tom courageously ran the Copenhagen Half Marathon in Fergus’ honour.  Their target was originally $2000 however when this post was published, they had raised in excess of a very impressive amount of $4000.

We would like to extend our deepest gratitude to Tom and Rob, who whilst in the depths of grief  having loss of their childhood friend, ran this gruelling event to raise funds to assist those living with a sarcoma diagnosis, in Fergus’ honour. 

“We will never forget you Fergus and we will forever be inspired by your courage and kindness.” (Tom Hulston and Rob Stein, September 2021)

 

 

Paediatric/AYA Cancer Researcher Dr Emmy Fleuren

Dr Emmy Fleuren is a research scientist specialising in paediatric/AYA sarcomas.

Emmy’s sarcoma-centred research journey started in the Netherlands at the Radboud UMC in 2010, over eleven years ago.   Since then, she has been undertaking paediatric and AYA sarcoma research across the globe at various world-class research institutions.  These include the Institute of Cancer Research (ICR) and Royal Marsden Hospital (RMH), London, UK, Monash University, Melbourne, and currently the Children’s Cancer Institute and the ZERO Childhood Cancer precision medicine program here in Sydney.

Cancer as a disease, has always fascinated Emmy.  “How is it, that at a given point in time, your body’s own cells start to act weirdly and grow uncontrollably? she questions.   It is very different from a viral or bacterial disease, where we know what is causing it, and the why and the how of cancer always piqued my curiosity.”

It is no secret Emmy loves what she does.

When asked why she explained, “We are doing experiments/analysing data on a daily basis that have the potential to ultimately change the outcome of a young patient with cancer. Because my studies are embedded within the ZERO Childhood Cancer Program, which is Australia’s, and arguably the world’s, most comprehensive precision medicine platform aimed to provide tailored treatment recommendations for individual childhood cancer patients, every result that we get can have an impact on a patient’s life. Being able to get meaningful results for a patient who needs our help right now is incredibly rewarding, and I feel so privileged to be part of a program that is able to do just that.”

Emmy has been driven by the numbers of young sarcoma patients she met whilst undertaking her PhD research in the Netherlands, which has placed a very personal edge on everything she does.

“They all shared the same frustration”, said Emmy: “Why am I still treated with a protocol from the nineties?”  Emmy has seen first- hand the detrimental effects these treatments can have on young patients, yet these treatments still were not enough to cure all of them. That left a lasting impression, and that is when I decided to go all-in on sarcoma research.

So how does this talented researcher, and mother of one see as the key to ongoing success?  In addition to securing the critical funds needed to make research possible, we need to attract and retain the brightest young researchers, and to have them get them as enthusiastic about sarcoma research as Emmy is.

“We can only go far if we go together!” said Emmy.

The ZERO Childhood Cancer Program, which is Australia’s, and arguably the world’s, most comprehensive precision medicine platform aims to provide tailored treatment recommendations for individual childhood cancer patients. In addition to including whole genome and whole transcriptome molecular profiling, the programme is now  looking at methylation profiles.  It has an incredibly successful and dedicated ‘Preclinical Drug Testing Core’ (PDTC). In the PDTC, the patient’s own tumour cells are grown the laboratory and in mouse avatar models, to test a wide range of clinically applicable drugs. A number of drugs have already been identified and ‘hits’ that were not predicted by the molecular profiling revealed, underlining the importance of these assays.

“Not many childhood cancer patients in the world have the opportunity to enrol in such a comprehensive program, particularly not patients suffering from rare diseases like sarcoma. This program has been a major determining factor for me deciding to make the move to Australia with my family in 2019, including our son who was ten months old at the time” said Emmy.

Closely linked to this program, my research is centred on building novel pipelines to be able to give targeted treatment recommendations to even more patients. Thanks to the Cooper Rice-Brading Foundation and The Kids’ Cancer Project, we will be able to perform a completely novel line of investigation, phosphoproteomics (looking at targets that are actually “switched on” and driving the cancer), while the program expands to ultimately include childhood cancer patients of all stages of their disease (from diagnosis, to relapse, to metastasis). This gives the team at Zero, CCIA a truly unique opportunity to screen for the presence of activated targets at different moments in time, which is incredibly exciting. One question Emmy in particular would like answered is, “can we start using novel, targeted therapies directed against activated targets earlier in the disease (for example at diagnosis), sparing these patients the side-effects of toxic chemotherapies and invasive surgeries?”

What really excites Emmy is that tangible progress is being made for sarcoma patients, in real time. The sarcoma research that she performed prior to her move to Australia was more laboratory-based, using sarcoma patient cell line models that have been around for a while, and any result found would not benefit that particular patient anymore. The next step for those studies has always been facilitating a clinical translation of results; bringing our laboratory findings to the actual patients.

Working within ZERO is completely different for Emmy. Every discovery made, has the potential to have an actual clinical impact for that patient. This type of research in “real-time” is what Emmy always wanted to do, and in Australia within this innovative research at the ZERO Childhood Cancer Program she can do just that. Precision medicine programs elsewhere in the world are also not as comprehensive as ZERO, who have the best chance of identifying a more specific, less toxic treatment for a sarcoma patient, by not only looking at the molecular profile of their tumour, but also performing state-of-the-art drug-screens on the patient’s own cell grown in our lab, and establishing unique mouse avatar models for the patient. It really is an amazing opportunity for young sarcoma patients in Australia, as no-one else in the world has access to such a diverse screening platform.

Emmy is working with a cohort of paediatric/AYA sarcoma specialists in Australia to fulfil hopes for the future of sarcoma which are:

    • Having ZERO more easily accessible to all childhood/AYA sarcoma patients, including those treated in adult centres.
    • From our own research: identified new, activated targets that can be switched off with specific, non-toxic drugs for patients that are currently missing out.
    • To have integrated my sarcoma research lines (including looking at activated targets and unexpected preclinical drug responders) to the mainstream ZERO program, and thereby increasing the number of patients receiving a targeted therapy recommendation.

What would Emmy’s greatest wish as a researcher be for the future of young cancer patients in Australia?

“That we will be able to make childhood cancer a curable disease for every type of childhood cancer, using drugs that are not only more effective, but also less toxic.”

CRBF together with The Kids Cancer Project  are delighted to support Emmy’s work and that of her remarkable team, within the Phosphoproteomic sarcoma specific trial under the auspices of the Zero Children’s Cancer Programme.

R U OK? Day Checking in on a loved one…

Today, on RU OK? day, we emphasise the importance of reaching out to those around you. In particular, to those who you know are going through a tough time, whether it be cancer, COVID, or life-induced.

Reaching out to someone never has to be a big deal. How good does it feel when someone tells you what a good friend you are to them? Reminding someone of this, can create the space for future conversations if they need to be had. And, it reminds them they aren’t alone.

And at CRBF, we are always here for our patients – no exceptions. We currently have an array of different support services in place, and in the not-too-distant-future, we will be able to offer even more. But for now, never hesitate to contact us through phone, email, or social media.

Checking in on those around you isn’t an annual event, but given the current climate in Australia, it’s a timely reminder.

Anya’s Wish. The legacy of one very special young woman.

Anya Zuber may have only been 19 when she passed away on the 12th September, 2020, but this truly remarkable young woman’s legacy will live on forever.

At age 13, Anya was diagnosed with a high-grade metastatic osteosarcoma, and would begin treatment at Westmead Children’s Hospital, where, over the next ten months, she would undergo six rounds of chemotherapy and limb-saving surgery on her leg.  This was particularly difficult given Anya’s loving family live in Armidale, and were required to relocate during this time, to be by Anya’s side.

 November 2015 saw the end of treatment, and Anya received the news she and her family were waiting to hear.  Anya was cancer free, and able to return home in time for a much-needed family holiday at the beach, and back to Armidale in time for Christmas.

In January 2016, Anya noticed unusual bruising and a lump on her leg with tests confirming the cancer had returned.   The family returned to Sydney for a further six months of intensive chemotherapy and high-dose radiation before once more being given the ‘all clear’ in August 2016.

 For the coming three years Anya enjoyed a rare normal.  Normal for a teenager can come in many forms – socialising with friends, being with family, and even attending school.  The simple things become so important.  Most adolescent patients miss the ‘their’ normal.  Those things we all take for granted until they are taken away in the blink of an eye.

Anya’s treatment was overseen by eminent paediatric sarcoma specialist oncologist, Professor Stewart Kellie, at the Cancer Centre for Children- Westmead Children’s Hospital before she transferred to an adult facility, at the Chris O’Brien Lifehouse, whilst supervised by arguably the one of the best bone tumour surgeons in Australia, Dr Richard Boyle and paediatric/AYA oncologist Dr Vivek Bhadri.

 In May of 2020, a recurrence of disease was found in Anya’s lungs and surgery was conducted July.  In August, Anya experienced further symptoms and it was confirmed in September there was a mass in the right lung, and Anya immediately returned to Sydney.

Anya passed on 12 September 2020, surrounded by the family she loved so much.

Despite the insurmountable adversities this inspiring young woman faced, her wish was to end the devastation sarcoma leaves in its wake, and to improve treatments and survival outcomes for those walking this road behind her.

 Anya’s family have worked with the Children’s Cancer Institute Australia (CCIA) over the past year to establish a research project called Anya’s Wish. They are committed to raising $600,000 over the next three years. This innovative and world-first research project will significantly improve therapies and survivability for young people diagnosed with osteosarcoma. 

 In Anya’s memory, funds are being raised for Children’s Cancer Institute, where in 2019, the institute began a new research program dedicated to sarcoma. Dr Emmy Fleuren head research scientist at CCIA, focuses on research developing ‘targeted therapies’ for use in children, which are not only effective at killing cancer cells, but are much less harsh than conventional chemotherapy, causing fewer side effects.

By pressing the link below you can contribute to Anya’s Wish.

https://www.ccia.org.au/blog/introducing-anyas-wish

Father’s Day – 2021


“Don’t forget to pick up a bottle of wine for dad for Father’s Day. After all, you are the reason he drinks…”

Father’s Day is a time when we turn our thoughts to dads, and those who fill that role for many of us.

From all at CRBF, we wish you love, strength, peace of mind, and a day to reflect upon beautiful memories, and a chance to make many more.

It is also a time we pause to remember those who no longer have their child to walk beside them, and those that no longer have their Dad to hold their hand. Each of these individuals holds a special place in our hearts.

#curesarcoma
#notgivingin
#missingyoucoops
#fathersday2021

Meet the remarkable Brendon Onorato

Meet the remarkable Brendon Onorato.

Brendon Onorato is the father of two boys, married to the love of his life, Luisa, and has an enormous love for his parents and twin brother.  In Brendon April of 2015, Brendon was diagnosed with myxoid liposarcoma

Brendon first noticed a lump on his thigh which was getting larger. After visiting a GP on 2nd of March 2015 and undergoing an ultrasound and MRI scan, Brendon learned that a mass in between the skin and fatty tissue had been discovered. A referral to a specialist on 24 March 2015, confirmed it was a tumour that would have to be removed with surgery.

Brendon was admitted for surgery on 1st April 2015, at the Royal Prince Alfred hospital.   Surgery lasted for just over two-and-a-half-hours with the surgeon removing the 10cm tumour.  Spending the next three days in hospital Brendon was then forced to wait 18 days for the pathology to confirm a diagnosis of  a myxoid liposarcoma, a rare type of soft-tissue cancer that occurs in approximately one in 100,000 people.

After further MRI and CT scans, Brendon was referred to an oncologist to commence radiation treatment starting on 1st  June 2015.

The 11th  September 2015 was one of the most important days for Bendon and his family, receiving the all-clear post-surgery and treatment.

Brendon underwent a PET and CT scan every three months for a two year period to monitor reoccurrence, and recently after being cancer free for six years, Brendon and his family were given the devastating news that his cancer had returned.

Brendon has devoted his time over many years to raising awareness of cancer symptoms in men in particular, who often ignore their health, and subsequently what could be very important early symptoms.

This is a man who has devoted so much to the community over the time he was cancer free, and now it is his turn while he fights yet another savage battle with myxoid liposarcoma.

To assist the family a Go Fund Me page has been set up by a very dear and close family friend, Stephanie Pletikosa.

With Father’s Day two days away, we would ask you to consider donating as little or as much as you can, to provide some relief to this young family, of the ongoing day to day costs of living, and more importantly, to allow them to focus on Brendon, and his treatment and recovery.

Please press on the link below:

https://www.gofundme.com/f/help-grazing-co-family-during-brendons-treatments

Childhood Cancer Awareness Month

September 1 marks the beginning of Childhood Cancer Awareness Month 

In Australia, more than 1000 children and adolescents are diagnosed with cancer each year, while worldwide, a child is diagnosed with cancer every 2 minutes.
One in five childhood cancers is a sarcoma.  Two out of five of those diagnosed with a sarcoma will not survive. While those who survive have a one in five chance of another cancer diagnosis over a ten year period.

 
September allows us to reflect on the lives of those children living with a cancer diagnosis, those who have undergone savage treatment regimes and survived, and those who lost their lives to cancer.  Cancer leaves devastation in its wake, and this is magnified when the patient is a child


CRBF wish to acknowledge the  dedicated clinicians, surgeons, researchers, MDT’s, nursing staff, specialist hospitals, and NGO’s who support our young cancer patients, and the outstanding contribution they make in  the lives of those young patients.


Join us through September as we highlight the work of many of these remarkable individuals, who are providing untold hope for our young at their most vulnerable time.

Cooper Rice-Brading – 22-01-1999 -24-08-2021

22 January 1999 – 24 August 2017

Always and forever. 

“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”

We would ask you today to honour Cooper’s memory by simply doing something for someone else. It doesn’t need to be grand, but something meaningful to lift the spirits of those around us.

In these very unsettled times, so many are hurting, and a simple act of kindness can make a world of difference.  

Coops showed us true strength in the face of adversity, and this made the world of difference to those around him, and continues to do so with the legacy he leaves behind.

The saddest of goodbyes…

In 2019, a visit to Chris O’Brien Lifehouse Day Therapy to meet with a young patient changed my life.

It was the first time I had been to the hospital after Cooper’s passing in 2017.  Simply driving through the suburb of Camperdown where the hospital was located would leave me cold, much less the thought of walking through the doors.  This time however, there was no option left to me as a remarkable young man, Fergus McCulla had appeared on our radar, and he had asked me to drop in on him while undergoing treatment. 

After sitting in the car in the carpark for what seemed to be an eternity, I finally found an inner strength to do what I was there to do.

Minutes later my anxiety was a world away.  Despite being in the throes of one of the most savage chemotherapy treatments, I will never forget Fergus’ warmth, his million-dollar smile, and his ability to somehow allay my anxieties, despite him having no idea how I was feeling or why?

That day I also met Fergus’ dad Dr Norman McCulla, gaining valuable insight into what can only be described as a uniquely remarkable family.  

Fergus’ life had not been at all easy.  At seven he was diagnosed with a paediatric cancer Non Hodgkins Lymphoma, which he fought and survived.  In his late 20’s, Fergus had a successful professional life, was pursuing his musical talents, had bought a divine country property in Brooklyn, and life was truly taking shape, when the unthinkable happened.  Fergus was diagnosed with the very rare spindle cell rhabdomyosarcoma.   

I left the hospital that day a changed person.  I learned to put my own anxieties aside, as the adversities in my life in comparison to the inspiring young man I had spent those hours with, paled into insignificance. 

Over the time that passed after that initial meeting, I had the privilege of spending more time with Fergus, and to meet his extraordinary family, three devoted and loving individuals who had endured more than any family should in less than three decades.  

I could not pretend to imagine the angst and heartache attached to a cancer diagnosis of a child aged seven, much less to face it all over again some 21 years later.  Fergus and his family were severely tested on so many occasions in his brief life, as a cancer diagnosis is only the beginning.  Treatment for sarcoma in particular, is as savage as the disease itself and leaves lasting mental and physical scarring for those involved.   Each time life served another curved ball, the family formed a ring of steel around Fergus, and simply got the job done.

Michael ‘Wippa’ Wipfli, who went on to form a special friendship with Fergus, his colleague Ryan ‘Fitzy’ Fitzgerald together with the team at Nova 96.9 heard of Fergus’ courage and the adversities he had faced for someone so young.  The team arranged a wonderful trip to New Zealand for Fergus and his family, to spend some very special time together in a place that held immense significance to Fergus, due to his love of the Lord of the Rings.  These were very special memories for each of the family and provided that strong sense of normal all sarcoma patients and their families yearn for so badly. 

For Fergus invasive radiation, brutal chemotherapies, experimental treatments, surgery, unimaginable pain and discomfort, and a plethora of side effects dominated his life once more, from the October 2018 to 20 August 2021, when the sheer exhaustion of the battle consumed this courageous young man.  

I cannot pretend to understand the gravity of what Fergus and his family have endured over two cancer diagnoses, and despite losing Cooper to this insidious cancer, I cannot pretend I know the depth of suffering the McCulla family are forced to confront daily, without their precious Fergus’ presence in their lives. 

Positives during the course of a sarcoma journey can be few and far between.  For me however, the lasting positive came from the friendship that formed with Fergus and his exceptional family. I know that I am not alone as this is a family who resonated with all who entered their lives.  

This special friendship is a lasting legacy of a very special young man, and something I will continue to treasure and hang on to very tightly during life’s challenging days ahead.  

Rest in peace Fergus. 

The end of sarcoma awareness month

As the sun sets on Global Sarcoma Awareness Month, we would like to recognise the efforts of those working tirelessly to improve processes and outcomes for this cancer. Also, the State and Federal Governments for the significant funding that has been forthcoming for sarcoma research over the past months.

We would also like to acknowledge the tireless and ongoing work of sarcoma clinicians, researchers and medical professionals who form the multi disciplinary teams nationally. 

It is an excellent opportunity to use this timely reminder of the importance of early diagnosis and symptoms that can be so easily overlooked. Please don’t ignore unexplained pain or lumps and bumps that do not go away.

See your health professional and have sarcoma ruled out. If you are not 100% content with the outcome from your initial consultation, you are within your rights to request a referral to a sarcoma specialist. 

And for clinicians, please ask yourself: “Could this be a tumour?”

We thank all those who spread the word over the past month, and in doing so, potentially saved a life.

 

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