October 2019 - Cooper Rice-Brading Foundation

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…

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.

Month: October 2019

The inspirational Fergus McCulla

ANZSA Scientific Conference 2019