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RCA KnowlegeBase Launch

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Rare Cancers Australia have today announced the launch of their online resource, KnowledgeBase.  This resource provides an excellent overview of clinical trials, cancer specific information,  hospitals with , multi-disciplinary treatment teams, in fact a very comprehensive overview of all resources for rare cancers.  Sarcomas fall under the rare cancers category.

The KnowledgeBase is a part of RCA’s wider Patient Support Program aimed at providing patients with a centre of knowledge, guidance, advice and hope. It is a collection of invaluable resources including a Rare Cancer Directory and a list of hospitals that have Cancer Centres. You will also find a list of Multi-disciplinary Teams and clinicians that have a special interest in specific rare cancers.

This new tool provides free, round-the-clock digital access to critical cancer care information and services, which are designed to give rare cancer patients a fighting chance.

To read more press the link below

http://www.rarecancers.org.au/page/1150/about-the-knowledgebase

Adam Shaw – in the words of his mum…

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Gabrielle Shaw became known to our family after the airing of Cooper’s story on the ABC 7.30 Report.

Gabrielle’s story resonated with me instantly and deeply, as she, like Henrietta Miller – Elliott’s mum, and I, had all lost our precious sons at such a tender age, to this insidious cancer.

A great deal of commonality existed between our boys, and the valiant way they chose to face this cancer, whilst continuing to live life to the full.  Each faced enormous physical andmental challenges, endless pain, an each remained strong and positive throughout, often protecting those they loved from the true reality of sarcoma.

As we each live our lives in a highly altered state, trying to make sense of our tragic losses – each knowing we never will, we also acknowledge how blessed we were to have witnessed the fine young men each of our sons had all become, albeit for such a brief moment in time.

We thank Gabrielle and her daughter Brianna for their participation in this forum, and for allowing the outside world to share a snapshot of the challenges young patients and their families face from the moment a sarcoma diagnosis is made.

Gabrielle Shaw writes candidly about her cherished son Adam

Adam was diagnosed with Cancer in September 2013. He was 21.

Adam had been experiencing pain in his groin during and after he played football. He was treated by a physiotherapist a couple of times, but found it wasn’t helping. One night he rang his sister Brianna saying he was in a lot of pain and that his mobility in his leg was limited. She advised him to go to the Emergency department and from there everything moved very quickly.

Tests showed a walnut sized tumour in Adam’s right pelvis. At that point Adam was living in country Victoria and we had to wait three weeks until we were able to get an appointment with the clinic at Peter MacCallum Cancer Centre in Melbourne. By this time Adam weighed 44 kilograms and his tumour was the size of a football. He was in a wheelchair due to extreme pain and because he couldn’t walk. His right knee was pinned up against his chest as the tumour encroached on nerves, muscles and blood vessels.

Adam was admitted to hospital as an inpatient, where he remained for nine weeks. At first it was unclear exactly what form of Cancer Adam had. Eventually he was diagnosed with a Malignant Peripheral Nerve Sheath Tumour, which is a form of Sarcoma on the nerves.

When Adam was first diagnosed I was working as a teacher at an International school in Hanoi Vietnam which complicated everything a great deal. Leaving my life behind in Hanoi, I flew home to care full time for Adam. When he was first admitted to hospital I didn’t have anywhere to live. Because Adam was an adolescent he was through the amazing people at On trac at the hospital and our social worker soon secured me a room at the incredible Vizard House in East Melbourne.

I learnt a lot about the good and beauty in others from my nine weeks at Vizard House. The most important lesson was compassion and empathy knows no limits. Regardless of how horrendous each persons day had been with their sick family member, everyone always found time to listen to, empathise, comfort and discuss others day and stories.

We discovered very quickly just how sick Adam really was and within days of admittance he was moved to the ICU with a severe infection within the tumour. We were informed at that point we may or may not have 24 hours left with him. Adam had to decide such things as should he freeze sperm for the future, should he sign a DNR, (which he never did because he couldn’t make that decision) and somehow process even a tiny amount of what our treatment team was advising us to do. Thankfully after a few days Adam was moved out of ICU into a normal ward and thankfully due to his age he always had a room to himself. Adam and I soon got into our daily rhythm. He was too sick to be mobile for the first month, so would get transferred to treatment and tests in his bed, with me accompanying him everywhere. I soon learnt what every sound, whimper, groan, cry or facial expression meant. This became vital as Adam was always hesitant to request breakthrough pain relief when he required it and I did become his voice.

The treatment team decided Adam was too sick for chemotherapy and it didn’t have a good record for treating Adam’s form of Cancer. So, Radiotherapy was the decided treatment in the hope it would shrink the tumour enough to make surgery a viable option. Adam had two rounds of radiotherapy. We were told due to the size and positioning of the tumour it was going to be difficult and the best outcome, if it was operable Adam would lose his right leg. Early December Adam had a Pet Scan to see if the first round of radiotherapy had shrunk the tumour. Regrettably during the Pet scan metastasis were discovered in both his liver and his lung.

Adam was discharged in December and we were asked to return after Christmas for more pet scans to find out whether the radiotherapy was going to make surgery possible. Unfortunately, the answer was no and we had to face the reality any future treatment was palliative. Trials were discussed with the treatment team, but Adam was just too sick. Adam chose to spend the majority of the two months he had remaining at home, with intermittent trips and stays in hospital. The radiotherapy had damaged a large portion of Adam’s skin on his pelvis and then the tumour broke through the skin. We had a palliative care nurse visit daily to debride the wound sight and change the dressings.

On the 17th February 2014 we were told Adam had approximately a week to live. The tumour had perforated the bowel and he had to choose whether he wanted to die at home or at hospital. How does someone of his age ever make that decision? Adam chose to die in hospital. He chose to go to the hospital on the 21st February and we were with him around the clock. The 22nd we were told we should say what we wanted or needed to say as he wasn’t going to be lucid for much longer. On the morning of the 25th February at 5AM Adam woke screaming. He was haemorrhaging from the open wound.

My beautiful boy died at 8:30 PM on the 25th February 2014. He was 22 years of age.

Charlii Croese. From the heart…

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As we continue through July, international sarcoma awareness month, we are honoured to be presenting a number of stories from young patients and their families.

Today we are going to introduce you to Charlii Croese. Charlii is an engaging, effervescent young lady, who despite her challenges with sarcoma, has never missed a beat. Charlii has shared some valuable insight into life since her diagnosis.

At an age when the most difficult decision most sixteen year olds have, is what to wear, Charlii was battling osteosarcoma of the femur, undergoing unspeakably rigorous treatment regimes and surgeries.

Unless you have witnessed the devastation this cancer causes first hand, you cannot begin to imagine what these young patients go through, and yet Charlii, and Imogen like so many others, refuse to allow this disease to define them.

To say we are full of admiration and reverence for Charlii, and other young patients traveling this road, is an understatement.

Charlii Croese in her own words

I was diagnosed with osteosarcoma in my femur on 29th of February 2016. I was 16 years old…

What I struggled with most was seeing everyone around me move on with their life and mine just stood still. I wasn’t normal compared to all of my friends.

I lost many other cancer patients that I met through my journey and I felt so guilty to still be here without them. They became my family.

I lost many friends that couldn’t deal with me being sick so they stopped speaking to me and would ignore me.

I became quite depressed while going through treatment as I was always either stuck in a hospital bed or at home staring at the same four walls.

Still to this day whenever I get any ache or pain in my body I always think the worst.

Each day I always have a moment where I think about my journey. I still struggle everyday with what I’ve been through and how many people I’ve lost. So everyday I just tell myself I’m a fighter and to be positive and take everyday as it come.

Mum always said to me everyday while I was battling cancer take it one day at a time and ’til this day it is exactly what I do…

The unstoppable Imogen Atkins…

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Imogen Atkins is an extraordinary young lady by any standard.   Imogen’s sarcoma diagnosis was made at the tender age of  15.  Her life was immediately turned upside down, undergoing a rigorous treatment regime  including major surgery,  but she like many other sarcoma patients, has chosen not to allow this cancer to define her life.

Prior to her diagnosis and the subsequent commencement of her treatment Imogen had the most beautiful long hair, which most teenagers (and adults) would envy. Knowing she would lose her hair throughout chemotherapy, she instead had it cut, and donated it to ‘Hair with a Heart, raising in excess of $27,000 in the process.  Her magnificent hair was then used to make wigs for patients with medical conditions causing alopecia, and many patients benefitted from her huge heart, and enormous generosity of spirit, when she was going through so very much herself at the time. Her capacity to think of others at such a young age is truly remarkable.

Imogen, now days away from her 17th birthday, defies the cancer she has battled, by resuming the sporting activities she loves, and selflessly helps others through her work with the Queensland Youth Cancer Service.

Imogen continues to embrace life to the fullest, and is a constant reminder to those around her how to rise above adversity and find meaning in your life, despite the hurdles that may come your way.  She is wise beyond her linear years, and we extend our heartfelt thanks to her, for sharing part two of her journey.

We cannot wait to see where life takes this inspirational young woman.

Imogen Atkins – in her own words…

 
After going through 8 months of chemo, it is amazing to be able to be back doing more normal things.  I still face regular check ups, and ongoing rehabilitation, but in no way have , or will I, let that stop me from trying to do and achieve what I really want.

Let’s start with school.  At the moment I am halfway through my final year and on track to get a good OP. even though many people encouraged be to , a) repeat year 11, and b) to go down the path of getting a Rank instead. I have experienced a lot of times when I really had to push for what I wanted, and I’ve learned that if I know I can achieve something, I should push and achieve it.

Prior to the cancer, I was a very avid rower.  It was truly heartbreaking and difficult when I was told I might not be able to row again, but being the persistent and slightly stubborn person I am, I refused to take that as a never.  As soon as i was able to, I worked at regaining my strength and bend in my knee.  So now I train several times a week, I am part of a crew, and it is amazing to be back on the water.  Despite the cold mornings of training, being on the water is one of the most important things to me, and brings me so much joy.

I have also found out that I like having a voice.  I am now part of the Queensland Youth Cancer Advisory Group.  In this group I, and several others, advise Queensland Youth Cancer Service on health service planning, delivery, evaluation education and training, together with developing spaces and facilities for young patients and their families.  We talk and discuss with people who are looking to improve their services.  I am basically a voice trying to make another young person’s cancer journey or experience, just that little bit better, and a little bit easier.  I feel this is really good and important.

After my cancer experience, I realised that I have to step into life, find ways of doing things, and never give up on my dreams.  I can no longer ski, so I’m learning to snowboard.  Recently I sat on a panel of people at a medical conference. I travelled to London and Finland with my family, and this month I’m going to be bridesmaid at my sister’s wedding.  I am about as happy as i can be having gone through a year of cancer...

Elliott Miller. In the words of his mother…

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To mark global sarcoma month, CRBF will be conducting a series of interviews, and publishing tributes to patients and loved ones affected by sarcoma, in an effort to portray the human side of this insidious cancer.

I met Henrietta Miller late last year, after she took the time to reach out to me, when I was in the depths of despair after Cooper’s passing.

Henrietta is a gentle and quietly spoken woman, with a huge capacity to give to others.   I was pleased I had accepted her invitation to visit, as she is one of the few people who can say they deeply understand the myriad of emotions, and the never ending wall of grief you experience after the loss of a child.

Henrietta’s son Elliott had tragically passed away prior to Cooper, and was treated within the confines of Chris O’Brien Lifehouse as Cooper was, and treated by many of the medical team who had also treated Cooper.  It was indeed not lost on me our commonality was borne through deep seated tragedy, and at times throughout our conversation, and through the tears, I found myself wondering why it was we were brought together by circumstances that really should never be?  Our boys were bright shining lights at the very beginning of the wonderful lives ahead of them.

I will never forget Henrietta’s serene manner, and the selflessness, and kindness she showed our family, by reaching out to us at a time when we were at our lowest ebb.  It must have been very difficult to do so, knowing that it would undoubtedly open wounds of the past, yet this amazing woman put her own emotions aside to help others.

Today we celebrate the essence of Elliott Miller, in Henrietta’s words…

 

 

Elliott John Miller 27/12/94 – 01/03/16

 

Elliott was a second year arts student at Sydney University majoring in performance studies. His was a fairly typical lifestyle for such a student, many late nights with the occasional burst of essay writing to just about keep things on track. Taking every opportunity to perform, he spent the better part of 2014 concurrently rehearsing at least five shows and dedicated 2015 to his burgeoning career as a director. The only complaint anyone could ever make about Elliott was really a complaint about a lack of hours in the day in which to gain an audience with him.

In August 2015, Elliott had been complaining of a sore jaw when he ate, but trips to his dentist and x-rays had not shown anything untoward. In mid September though, a specialist dentist finally ordered an MRI scan which revealed a tumour. Following a biopsy his initial cancer diagnosis was Ewings Sarcoma, but this was later changed to an embryonic Rabdomyosarcoma; an incredibly rare form of childhood cancer, one that only affects about seven adults a year worldwide.

In October 2015, with all our lives inextricably changed forever, Elliott began chemotherapy  and radiotherapy at the Chris O’Brien Lifehouse, under the care of Professor Tattersall. Unfortunately, despite everyone’s best medical efforts, nothing could halt his tumour rapidly spreading from his jaw to his lungs where it continued to grow.

Elliott died on 1 March 2016, a little over four months after his diagnosis. He was 21 and on the cusp of an incredible future. Elliott performed right to the end, and never lost his sense of humour or the ability to saunter onto any stage, own it and make people laugh. Whether as a stand-up improv comedian, actor or director, Elliott never failed to impress.

He and his enormous potential are deeply missed by all his family and his extraordinary number of friends.

July – Global Sarcoma Awareness Month

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Yesterday marked the first day of global sarcoma awareness month.  A month where we  take the time to remember and to honour the memory of those who have needlessly lost their lives to this cancer;  provide unconditional love and support to those you may know going through gruelling treatment regimes; and to provide hope for the future for those who are yet to walk this road, and those undertaking the battle of their lives, by talking about this cancer, and donating to sarcoma research.

In Cooper’s memory, we ask you to assist CRBF in realising his vision of changing the trajectory of this insidious disease for young sarcoma patients.

100% of all donations received by CRBF will be directed to pipeline research projects, thus ensuring hope for the future for those living with a sarcoma diagnosis.

A critical need exists to positively alter the change to survival outcomes which have not shown improvement in over 30 years.

Complex medical questions surrounding sarcoma need answers, and the answers lies in research for this cancer.

Read more about sarcoma by pressing on the link below

https://canceraustralia.gov.au/system/tdf/publications/sarcoma-fact-sheet/pdf/sar_sarcoma_factsheet_0.pdf?file=1&type=node&id=6066

ACRF & The Centenary Cancer Research Centre provide much needed hope for sarcoma patients

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ACRF together with the Centenary Cancer Research Centre provide hope for sarcoma patients

 

On the 30th May, I had the pleasure of attending an Australian Cancer Research Foundation function, where key speaker, was Professor Phillip Hogg, Director, Australian Cancer Research Foundation (ACRF) Centenary Cancer Research Centre, Centenary Institute, spoke at length about PENAO, which is an experimental anti-cancer drug which he invented.After searching the globe for experimental treatments for our son Cooper, which showed signs of efficacy for rare cancers such as sarcoma, it was indeed a relief to finally hear there has been headway made in this crucial and much needed area of research.

PENAO has recently completed a Phase I clinical trial in patients with solid tumours at three hospitals in Australia.  It inhibits an enzyme central to sugar metabolism in tumour cells called mTOR, and combines very well with another mTOR inhibitor, everolimus.  Everolimus is an approved cancer drug.  Together, these drugs deplete cancer cells of mTOR.

A Phase I/II trial of PENAO in youths and adults with sarcomas that have an activated mTOR pathway based on mutation analysis is being planned.

mTOR pathway aberrations include PIK3CA mutation, biallelic PTEN loss, TSC2 mutation, Akt mutation, etc.  The Phase I component is 2 x IV PENAO dosing per week to define the Phase II dose.  The Phase II component is PENAO + oral everolimus.

ACRF funding helped establish a world class Centre for Basic and Translational Cancer Research on the Royal Prince Alfred Hospital site. This state-of-the-art facility houses the basic and translational research components of a Comprehensive Cancer Centre (only the second in Australia). The new centre extended the reach of basic biological research on cancer and its translation into cancer prevention and control.

The Centre was officially opened in March 2016.

Grant applications - ACRF this year will include:

  1. 2018 $10M Major grant
  2. 2018 Annual grant

The Cooper Rice-Brading are proud to provide our continued support the Australian Cancer Research Foundation.

Trump signs ‘Right to Try,’ says it will save ‘tremendous number of lives’

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Please take the time to read this very relevant development in the United States, which will make a quantifiable difference to those patients who have exhausted mainstream treatment options.

This process in Australia, can take many weeks to facilitate, and this is time a terminally ill patient does not have.

Despite our political persuasions, this is a positive step forward for a marginalised group currently without a voice.

There’s nothing like a good old fashioned Mother’s Day ‘roast’…

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Below is a transcript of the speech delivered by

Mitchell Rice-Brading

at the

CRBF Inaugural Mother’s Day Breakfast

11 March, 2018.

Cooper Rice-Brading Foundation board members, invited guests, and in particular, to each mum in the room this morning, welcome.  My name is Mitchell Rice-Brading, and it is my brother’s name, that the Foundation proudly bears. I would like to thank you all for taking time out of your busy schedules to support the Foundation this morning.

It is indeed a pleasure to stand before you, and to embrace this celebration of a day, even though a number of us in the room will be thankful we actually remembered Mother’s Day this year. As sons and daughters, we celebrate the fact we dodged yet another bullet, that would see us otherwise trying to find a Coles flogging a box of Lindt chocolates at 50% off on Sunday morning. Never mind the fact we’re generally horrifically hungover, and are taking trips to the bathroom every 15 minutes during brunch. Of course, mums never articulate their disappointment, but you can tell they take some joy out of watching us squirm, and the icy stare says it all…

Jokes aside, no matter how much we do, or do not show it, we all remain grateful for the presence of mums in our lives. This particularly applies to matters of appearance. I’m sure I’m not the only one in the room here who receives feedback on their attire. I mean, I for one don’t know how I’ve coped without mum’s daily hints and tips over recent years, since spending less time at home. In fact, it’s really a testament to mum that I’m talking up here today fully clothed. Looking ahead 20 odd years, I can see a day when I’m visiting mum, like the caring son I am, and despite the fact she’ll be closer to *mumble*, her inner Alex Perry will appear, and she’ll comment on what I’m wearing. Ah well, at least it’ll be easier walking out of the cheapest retirement home in Sydney, knowing my decision to ship her out to Blacktown had been validated.

I should give everyone in the room some context for my comments here. All these bits of advice on my outfits, come from the same woman who took pleasure out of dressing coops and I in matching sailors outfits as innocent and helpless toddlers. Apparently looking like back-up dancers for the village people wasn’t enough, and we were also forced to rock haircuts where I can only assume we ran into financial trouble and couldn’t afford a hairdresser, so mum placed bowls on our heads and shaved anything that was visible. The result had us looking like we belonged next to the Beatles during the 60s, and fortunately, there are a pair of charcoal drawings on our walls ensuring our bowl cut phase is preserved forever. Not a dinner party goes by where the two creepy kids on the wall aren’t brought up, so thanks again mum for ensuring the good old days have been immortalised.

I should also mention mum’s prowess in the kitchen. Many of you here today will know mum as a very proficient cook, and I’m not here to dispute that, however there have been some swings and misses over the years. I distinctly remember one morning, where after weeks of unsuccessfully trying to get coops to take his morning fish oil tablet, mum decided to take things into her own hands. She very sneakily squeezed the fish oil under his omelette, operating under the assumption it would go unnoticed. It didn’t. “Muuuum my omelette tastes disgusting, what have you done to it”. “Nothing cooper, there is nothing wrong with it, now please stop complaining and eat it”. Of course, there was something wrong with it. There was fish oil in it, and that’s disgusting, but hey you can’t blame a mum for trying.

Now I know many of you will have parents on social media, and I know a similar amount of you will have parents who don’t know how to use social media, but I still think mum takes the cake. There are no two ways about it: it should be legislation that my mother is not allowed near an Instagram, Facebook, or Twitter account. However, until Mr Turnbull responds to my emails, we will continue hearing stories like these. Recently, I was messaged by a friend, saying that the Foundation Instagram page had put up an interesting insta story. I thought nothing of it, only to check the insta story, which is visible to all, only to be greeted by none other than mum, staring at the camera, unintentionally zooming in and out on her confused face five times. I could ask mum 100 times to put up an insta story, and every time she would honestly say she has no idea. But in my opinion, she saved the best for Dad, when she was under his alias on Facebook. thinking she was using the Foundation’s page, mum got excited when she saw the “add friend” button, and pressed away at familiar names and faces. Shortly after, I was made aware to the fact my father had been adding not only several of my friends, but also boys and girls from several years below. I need not elaborate on how uncomfortable this was for all involved, for so many reasons. So, if you’re listening Mr Turnbull, please get back to me A.S.A.P.

Mum wanted me to keep this introduction light-hearted this morning, and don’t worry I could stand up here all day rattling off anecdotes about her fails as a mum, but it would be remiss of me not to mention her qualities as a mother, and a person. For every fish oil infused omelette, there have been at least like, maybe 10 non-fish oil infused omelettes. Of course I’m kidding – Coopsand I were blessed growing up with daily hot breakfasts, and I know for a fact friends loved coming over for sleepovers, because breakfast itself was normally a 3 course meal consisting of fruit, eggs and bacon, and pancakes. Every morning we were driven to school, despite living one short bus trip away, and every weekend she’d be on the sidelines supporting us with our footy and cricket. In fact, this support was often audible. Very audible. I knew I’d done something good when I heard that familiar shriek reverberating across the field we were playing at. And of course, there’s her tireless work for the Foundation, ensuring the legacy Coops started is carried on valiantly, by putting on beautiful events like this one today. So mum, I want to thank you for being the kindest and most generous person I know, and don’t ever stop asking me if I would consider trying that other pair of pants on?

And to all the mums out there, I’m sure your own boys and girls will remind you over the weekend, but thank you for putting up with us. Thank you for picking us up when we got too drunk on goon at a party whilst underage, for cooking us dinner when we said we would be home and then we weren’t, and for letting us use the car for a couple of hours, and then not seeing it again until it needs to be filled up with petrol several days later. We all love you, and are blessed to have you in our lives.

Thank you for bearing with me, and I hope you all continue to enjoy the rest of your morning.