How do we ever find the words to thank you?

Walkley Award winning ABC journalist and producer, Lesley Robinson has worked in current affairs for more than fifteen years, working for the ABC Foreign Correspondent, ABC News and Australia Television, before joining the 7.30 Report.  This year Lesley put yet another jewel in the crown at the ABC by adding her highly successful style of journalism to the Four Corners team.

Lesley lovingly and respectfully produced Cooper’s story which was aired on the 7.30 Report on January 15 this year, and had spent an enormous amount of time with him filming him for the proposed story.  Cooper had so much time for Lesley.  He saw her as a serious journalist, and one who could reliably portray the perils of a sarcoma patient, but he also saw her as a very genuine and kind woman, and a devoted mother – someone he could trust.  Coop was happy to have Lesley and her crew to film him doing what he loved over a period of many months.

Lesley became very close to Coop, and understood him well.  He in return, forged a strong bond with her, and allowed her to see the raw reality behind the diagnosis, something he did not do with many.  Lesley became very special to Coop and to our family over the months prior to his passing, and afterwards.

Three weeks ago, I was alerted by a third party, to the distressing fact, the precious, and largely unseen footage of Cooper had gone missing.

This footage bore the closing months of Cooper’s life, at a time when he was still happy, upbeat, and hell-bent on conquering his condition.  We were not yet to the point where our family were able to watch this footage, however we were comforted by the fact the ABC had made the decision to give it to us, when they were under no legal obligation to do so.

After the year that has been for our family, this was indeed the final straw.  The past three weeks have been simply heart breaking, as we exhausted all avenues in an attempt to locate these files, and in doing so, being met by obstacle after obstacle. It did feel at times like the most bitter of blows after losing Coop.  There were days where it felt very hard to breath as we contemplated the extent and gravity of this situation.

As Coop declined, we would never allow any cameras, ours or others, around him.  He despised his decline, and it was not something that we felt, should ever be captured.  The footage taken just weeks prior to this however, showed a very different young man, facing his challenges in the same fashion as he had for eighteen long months.

Last night, out of sheer desperation, I contacted Lesley, who I had not wanted to bother with this issue.  As a producer, Lesley is not expected to keep rushes (raw footage) whilst filming a story, so I felt it may cause her angst to be made aware of the situation.  She responded in a very timely manner to tell me she felt there may be hope, as she often keeps copies of ‘important or precious’ footage.  At 6.53 last night I received a message from Lesley saying she had the files.

There are simply no words that can express the extent and depth of our gratitude to Lesley.

Suffice to say we will never be able to adequately thank her for returning these precious memories to us…

 

 

Truly beautiful inside and out…

Mama Cax (Cacsmy Brutus) is a Haitian born model , advocate, blogger and motivational speaker, based in New York who holds a BA and and MA in international studies.  At 28 these achievements alone are impressive by anyone’s standards, and her life at first glance, seems to be complete.

But it is not just her stellar professional career that sees this stunning young woman stand apart from others, Cax as she likes to be called, has faced unimaginable adversity in her 28 years. Diagnosed with osteosarcoma which had metastasised to her lungs, and at the tender age of 14, the fight of her life began.

Cax early life was near perfect, in the idealic surrounds of her home in Haiti. Then in a blink of an eye, this all changed when constant pain in her hip was, after many visits to her doctor, finally diagnosed as osteosarcoma. Like most sarcoma patients, the diagnosis simply marked the beginning of a journey that most people would struggle to comprehend.

An intensive neoadjuvant chemotherapy protocol for twelve months was followed by an invasive twelve hour hip replacement to remove the tumour from the bone, together with a metal implant, which Cax’ body rejected, proved to be unsuccessful. The result was an amputation of her right leg, together with half of her pelvic bone. Keeping in mind all along Cax was the tender age of 16. When I was 16 the biggest issue I faced was what to wear, or how to avoid homework, and I am sure I am not alone.

The toll was indescribable and understandably, severe body image issues began to manifest, as the standard prosthesis that was fitted did not look real, and the reality of the magnitude of surgery set in. This is something rarely considered by those on the outside looking in. If you have your life, then to the outside world – you are deemed one of the fortunate ones. For those living this nightmare, it is yet another bitter blow.

Cax sourced an online community who identified with her concerns, she found Alleles, a company who made “fashionable, beautiful prosthetic covers”, and the shift in her self confidence began. During this time, Cax began her now highly successful Instagram account ‘Mama Cax’ which currently has 141,000 followers, to share her journey of ‘self love’.

By living by her mantra, she was able to “encourage others to feel less insecure and more empowered in theirs.” Adding, “I no longer feel disgusted looking at my scars. I now see them for what they are: proof that I survived, that I’m still here, and against all odds, won a vicious battle with cancer, and that’s nothing to be ashamed of.”

Cax, through sheer courage, determination and resolve, has turned the unthinkable, into a vehicle in which she guides and inspires others that walk behind her. She is a highly successful blogger, who is a disability advocate who has earned the right through her experience, to speak about positive body image.

For those of us who have lived this nightmare that is sarcoma, either as a patient or the loved one of a patient, we thank this inspiring, beautiful young woman for all she has done and is doing for those without a voice.

Biosceptre’s Phase 1 Clinical Trial for anti-cancer vaccine BIL06v approved by Ethics Committee

On the 21st of February Biosceptre’s proposed Phase I clinical trial for BIL06v (anti-cancer vaccine) was granted conditional approval by the Bellberry Ethics committee. Biosceptre is now proceeding to take BIL06v into a Phase I trial in late Q2 or early Q3 2018.

Biosceptre has high confidence in the safety of BIL06v, in part as a result of pre-clinical studies and compassionate access patients treated in Australia under the TGA’s Special Access Scheme.

The planned clinical trial will recruit between 20 and 30 patients from a basket of late stage cancers and seeks to confirm safety, tolerability and immunogenicity of BIL06v.  The planned clinical trial will also seek to identify early indications of efficacy in humans.

CEO Gavin Currie said “Having recently closed entry to our Series A fund raising round, we are pleased that this fully funded clinical trial, building on significant preclinical data, has been conditionally approved.  We consider that a successful clinical trial, our first for a systemic therapeutic product targeting nfP2X7, will provide further validation of nfP2X7. We are hopeful for first patient recruitment in Q2 2018.”

 

Read more about the very promising developments regarding the BIL06v anti-cancer vaccine and nfP2X.

http://www.biosceptre.com/technology/

Rare Cancers Australia KnowlegeBase Launch

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 – His sarcoma journey told through the words of his mother Gabrielle

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 speaks from the heart about her sarcoma journey…

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…

Meet the unstoppable Imogen Atkins…

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 – Henrietta

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

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.