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)

 

 

Precision medicine & phosphoproteomics

Precision medicine and phosphoproteomics for the identification of novel targeted therapeutic avenues in sarcomas.  

Highlights

•  Outcomes for pediatric/AYA sarcoma patients are poor and no targeted treatments exist.
•  Pediatric and AYA sarcoma patients rarely harbor actionable genomics aberrations.
•  Phosphoproteomics captured novel actionable drivers missed by genomics screens

•  Phosphoproteomics explained critical targeted drug mechanism of action/resistance.

•  Outcomes in personalized medicine platforms may be enhanced by phosphoproteomics.

Press the link below to read more:

https://www.sciencedirect.com/science/article/pii/S0304419X21001116

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

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.

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. 

CCIA Phosphoproteomic Sarcoma Trial

July 2021, saw the allocation of funding through the efforts of media heavyweight, Michael “Wippa” Wipfli in Celebrity Apprentice Australia, to the phosphoproteomic sarcoma specific trial, under the auspices of PRISM 2, Zero Children’s Cancer Programme. “Wippa’s” significant personal sacrifice throughout filming, and that of his young family, was on behalf of CRBF and sarcoma patients nationally.

The Wipfli Family Sarcoma Research Fund will be directed to the programme which will aim to conduct a high level tumour analysis on all sarcoma tissue samples with a view to discovering and matching personalised therapeutics not currently used for the treatment of sarcoma. Dr Emmy Fleuren will oversee this cutting edge research at the Children’s Cancer Institute of Australia, and enrolments will commence immediately.

To read more about this innovative research, please press the link below:

https://www.ccia.org.au/blog/community-funding-to-help-kids-with-sarcoma

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.

 

Let’s Talk More About Sarcoma Ep 2


If you are one of the 2300 people who will be diagnosed with sarcoma in 2021, this podcast may help you understand the importance of the medical team that are assigned to you.

In Episode 2, we hear from Pathologist Daniel Wong, Sarcoma Nurse Consultant Jacky Woods, Associate Professor David Gyorki, eminent sarcoma surgeon and ANZSA Director, Clinical Psychologist Deb York, and @rarecancers Patient Care Coordinator, Christine Cockburn. Each use their wealth of experience in this area to provide insight into the importance of the Multi Disciplinary Team when undergoing treatment for sarcoma.

We thank each of these very busy professionals for their time and for sharing their knowledge in this podcast.   Special thanks to Cathrine Mahoney and Darcy Milne for once more providing their expertise and professionalism to produce this series, and in doing so, providing a useful resource to all sarcoma patients and their families.

Press the link below

https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5hY2FzdC5jb20vcHVibGljL3Nob3dzL2xldHN0YWxrYWJvdXRzYXJjb21h?sa=X&ved=0CAMQ4aUDahcKEwj4hNfd_pDyAhUAAAAAHQAAAAAQAQ&hl=en-AU

Salesforce for Sarcoma…


It all started with the CRBF Sarcoma Awareness Video…

Geovanna Pazmino, Lead Solution Engineer (Non-Profit)| Salesforce shared the video with colleagues who knew Celso and one of them, Jason Ghasson responded by asking what they could do to help?  After brainstorming a few ideas, they quickly realised that a target of raising $10,000 would be hard to achieve alone. This is where the group grew from 2 to 5 with Selin Ozdemir Hatcher, Lorenzo Demos ,and Judy Fang joining forces!

In a matter of days and with regular WhatsApp calls during lunch and after hours, the wheels were well in motion. Each of them reached out to different people in the organisation to get support and to encourage managers to spread the word in their team meetings. The response was immediate. People generously donated, with over $2,500 raised in the first few days. To amplify the message further, members of the engineering team created graphics for Zoom call backgrounds – just one of the many creative ideas used to drive awareness and raise funds as Sydney and Melbourne went into lockdown.

Many ideas were brainstormed (including possibly shaving someone’s head) and one that proved to be a great success was running 2 virtual exercise sessions: Zumba and Yoga. These sessions would help people stay active during the lockdown and keep their minds off of all of the crazy news that was going on.

How do we ever thank the team at Salesforce for their generosity of spirit?

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