We congratulate Professor Michelle Haber, Children’s Cancer Institute Sydney, as a deserving recipient of the 2019 ACRF annual grant for her ground breaking programme incorporating the liquid biopsy.
Reducing the devastating impact of cancer treatment on children
The current precision medicine treatment recommendations for children are based on an invasive and often painful procedure – tissue biopsy.
The $3.5 Million grant will fund next-generation sequencing technology to develop highly sensitive and minimally-invasive tests for children with cancer- using blood and body fluid samples.
This technology has the potential to benefit paediatric sarcoma patients nationally, and CRBF will be partnering in this exciting initiative over a three year period, to provide a dedicated sarcoma researcher, to work in tandem with this initiative. The programme is the work of Dr Emmy Fleuren, who has incepted the sarcoma specific Phosphoproteomic study, and will work in tandem with the work of Professor Haber, in the area of liquid biospsy.
Read more about the liquid biopsy programme
When Cooper was in the hospital fighting for his life in Australia, the 18-year-old was extremely curious about why there were no new treatments. He asked his doctors’ many questions his dad Colin Brading noted. Cooper passed due to the bone cancer, tragically, but his family set up a foundation to help search for a cure to the disease—it was what Cooper wanted. His life force lives on in his foundation which will persist from now onward to help others that were in his position.
Enter Interleukin-23 (IL23)
Researchers at Garvan Institute of Medical Research uncovered that the immune molecule is key to the growth of the tumor and targeting it in studies successfully shrank cancer in mice reported 9 News in Australia. Immunotherapies targeting IL23 represent an important push in the fight against autoimmune diseases such as arthritis, inflammatory bowel disease, and the skin condition psoriasis. Professor David Thomas with Garvan Cancer Research and Director of The Kinghorn Cancer Centre noted: “When we blocked IL23 or knocked it out in the mouse in this particular case, we stopped tumors from development.”
Planned Sarcoma Study Powered by the Spirit of Cooper Rice-Brading
The Cooper Rice-Brading foundation is helping to pay for clinical research along with the Garvan Institute of Medical Research to explore existing IL23 therapies for this form of bone cancer. Funds inbound will go towards clinical trials which will commence before the second half of 2020 reports 9 News. Professor Thomas noted, “We hope to treat up to 32 people with advanced, incurable sarcomas.”
The Cooper Rice-Brading Foundation
For those that want to contribute to keeping Cooper’s vision alive, they can follow the link to the Cooper Rice-Brading Foundation and contribute so that we can be certain that this important clinical trial will occur. Brading’s dad stated, “it is Cooper’s vision becoming a reality.” See the link for the donation page.
The Garvan Institute of Medical Research
Garvan Institute of Medical Research is a leading, multi-disciplinary biomedical research institute in Darlinghurst, Sydney. With some of the brightest minds and best technologies on the planet, they like to look at the big picture of health and disease.
They were founded in 1963 by the Sisters of Charity as a research department of St. Vincent’s Hospital. Now one of Australia’s largest medical research institutions with approximately 750 scientists, students and support staff.
Major focus areas for investigational research include cancer, diabetes, osteoporosis, Alzheimer’s disease, Parkinson’s disease as well as other autoimmune disorders and asthma. They specialize in genetic and molecular technologies and emphasize collaborative research.
In 2014 the institute became part of an elite group that has the ability to sequence the human genome at a base cost below $1,000 each ($1,000 genome) when it purchased the next generation of genome sequencing technology, capable of sequencing 350 genomes a week.
Resilient, courageous, humble and brave. Four words that we have come to know commonly relate to young sarcoma patients.
Throughout a cruel battle with osteosarcoma, spanning four and a half years, Tom Hardyman embodied each.
Tom lived his life to the full, despite the immense challenges he encountered at the hands of the insidious cancer, osteosarcoma. Tom lived a quarter of his brief life on a knife’s edge, often in unimaginable pain, and forced to contemplate his mortality at from the tender age of 16, when he was diagnosed. He did so with immense dignity and grace.
Tom’s battle with sarcoma was silent. It was relentless as it was selfless. He did not want others to be afraid or saddened by his diagnosis, and he fought hard to have his life remain normal in a highly abnormal situation.
While undergoing eight months of chemotherapy, he completed year 12 with outstanding results and received a university scholarship to study mechanical engineering. His dream career was to work as a Formula 1 race engineer and he was well on his way to achieving that goal gaining valuable work experience with V8 and Porsche supercar teams and more recently as the data engineer for Gilmour Racing’s Formula 3 team. All the while he privately managed the many challenges his sinister disease, sarcoma, threw at him along the way.
Throughout this time, Tom’s family continued to inspire us all. The love, grace, determination, and dedication they each showed Tom, is something that those of us who were privileged to witness their commitment, were left beyond words. Mum Leanne, dad Paul, sister Chloe, and partner Jess, were instrumental in providing years of behind the scenes love and support to Tom, while selflessly allowing him to run his own race. The extended family too numerous to mention, were as instrumental, and it soon became evident, this cohesive family was one very special team. You would walk the earth to find a family more committed to their precious Tom.
The Summit for Sarcoma 2019, is a shining example of the family’s ability to think of others, whilst in the midst of their own private hell. Respecting Tom’s wishes for his battle to remain private, Leanne, his Uncle Andrew and cousin Ben, created a fundraiser which will see Andrew and Ben summit Mera Peak in the Himalayas, with all funds raised by this superhuman feat, to be directed to the QIMR, for research into osteosarcoma. Further to this, Tom’s Aunt Katie has donated hours of time and professional expertise to assist our work at CRBF, with Grandmother Jennie offering voluntary hours with fundraising events and networking with other families.
In view of this, it is hardly surprising the Hardyman family have asked for donations in lieu of flowers to be directed to the 2019 Summit for Sarcoma, to prevent other patients and families living the heartbreak they are forced to live. Click the link below for information
In late 2019, Tom’s future looked to be short, and in his distinctive style, despite his prognosis, and the unimaginable pain he lived with daily, he fulfilled a dream, of buying his very own McLaren car. In what appeared from the outside looking in as a “middle finger” to the cancer that was ravaging his body, Tom spent hours driving his bright orange sports car around Brisbane and beyond, and in doing so found unbridled joy. He also shared the joy of his car with many others including complete strangers. From the outside looking in, Tom was the envy of many. It just goes to show, we should never make assumptions about others, as we often just need to scratch the surface to reveal the true picture.
Living each day as our last is arguably a quality we only obtain, when there is a distinct possibility it could be. Tom Hardyman personified this, and in doing so, reminded us all of the precious opportunities life affords us. We are all currently traversing a testing period of our lives, and with so many restrictions in place, it is easy to dwell on what we can’t do, and neglect what we can do. But we must try to recognise the doors that have now opened in the current circumstances: We can spend time connecting with our family, we can study and read and learn things we wouldn’t have time for, and we can reflect on our own personal mental and physical health. We can make the most of every moment we have, just as Tom did during his inspirational journey.
From all of us at CRBF, we send our deepest and heartfelt condolences to Tom’s remarkable family and to his loved ones.
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
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…
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.
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!
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.
[video width=”400″ height=”224″ mp4=”https://www.crbf.org.au/wp-content/uploads/2019/10/fergus-cut.mp4
Fergus McCulla first appeared on our radar in late 2018, due to his raw and factual accounts of his current cancer treatments, which he posted on his Instagram page ‘The real face of cancer”…
We connected via social media, until finally meeting whilst he was undergoing treatment at the Chris O’Brien Lifehouse.
The thing that stuck in my mind after meeting Fergus for the first time, was his bright and sunny demeanour, and a beautiful smile that was ever present, despite what he is forced to relive for a second time. I have since come to realise the entire family are the same. Mum Jane, dad Norman, and Fergus’ beautiful sister Anna, have been by his side every step of the way, not once but twice.
Fergus was diagnosed at the age of 7 with Non-Hodgkins Lymphoma in the bowel. He had been experiencing intense abdominal cramping, and the discovery of NHL was only made after having his appendix removed, and a biopsy of my bowel returning as malignant. This is very rare for a child to experience.
After surgery and chemotherapy, and then receiving the all clear, Fergus went on to live a very normal life post-cancer, but he did understandably suffer mental trauma that had lingered from his sickness as a child, and an underlying worry when he became ill, that his mind would race to the worst conclusions if he experienced any pain in his body.
Fergus had spent several years in bands touring around Australia, and after realising his lifestyle as a musician wouldn’t support him long-term, he was given the opportunity to work in the family publishing business at the age of 25. He moved into his own place in 2017, and was loving his career and life was moving along perfectly.
Things changed in the blink of an eye, some 21 years after his first cancer diagnosis, in July of 2018. Fergus had a growth on his gum, above top left incisor – which he had been monitoring for about a month. He decided to have it looked at, and was prescribed antibiotics to stop infection – which had no effect. After visiting a second GP, being prescribed the same antibiotics and having no results, he then visited his local dentist for root canal – which was unsuccessful as the nerves in his teeth were still very much alive. He was then referred to a specialist, who took a biopsy from his gum, which came back as benign. As his situation was unusual, and showing no definitive answers, together with his history of cancer, he was then referred to another specialist.
Fergus’ results from a second, more invasive biopsy came back, and he was diagnosed with Rhabdomyosarcoma of the maxilla, a rare and very aggressive form of cancer. As the tumour was in a favourable site, the best option was to immediately resect his upper jaw – gaining a clear margin around the tumour. There was however, a chance his body may have immunised itself to the drugs he had during chemotherapy earlier in life, and they would have no effect.
Fergus is now part way through a fibula-flap reconstruction. Initially his maxilla, along with the tumour were removed, and replaced with a graft taken from his left thigh. This took three surgeries before clear margins were gained around the site of the tumour and the graft took successfully. He will require dental implants toward the end of this year, then in 2020 he will be doing reconstructive surgery – where his fibula will be taken for a bone graft to recreate his upper left jaw.
Earlier this year Fergus completed 30 sessions of radiotherapy, and is just about to finish a 6 month course of chemotherapy. Radiation for this cancer requires the patient to wear a mask/plastic mould, most prefer sedation, as it is terrifying. and due to the close proximity to the brain, the patient is required to remain very still, under the plastic mould. Sessions last between 15 and 30 mins each time.
Fergus was very well acquainted with already the effects, and challenges of chemotherapy, however extensive surgery to the mouth and jaw, has required a lot of adjustment. No longer being able to eat without a knife and fork, and having to consider things like the texture of food which can be so painful, the size of food, and temperature. Things that we all take for granted, have now become daily struggles.
Radiation therapy was very difficult for Fergus due to the effects on the head and neck area, which become extremely painful towards the end of treatment, and the fatigue is overwhelming. The basic process of taking a sip of water could not be done without intense pain, much less eating food or speaking.
The quote below sums up Fergus’ attitude to the appalling hand of cards he has been dealt.
“Although not ideal, and not yet over, things are looking very positive. It has been a testing experience, but the real gift is life – which I’m incredibly grateful for. I’m also grateful to have the tremendous support of my family, and of so many friends, work colleagues and extended family.”
It is sarcoma patients such as Fergus who remind us that even when we are having a bad day – we aren’t…