Category: Cancer community

Because today is Mother’s Day it is one of three days each year we can use the CRBF social media platform for a post with a personal twist.

Those who know me, know I love our children Mitchell and Cooper to the moon and back, and together with CRBF co-founder & long-suffering husband Colin, & errant French Bulldog Betty, (not necessarily in that order) they are put very simply, my life.

On Friday, Mitch, delivered a flawless segment at the Covid ravaged CRBF Mother’s Day Breakfast. He roamed the room & thanked our key guests. Others were not quite so lucky.  I was one of them.

For those of you who didn’t attend this event Mitch informed our guests I “incessantly hounded the event organisers to have the venue serve alcohol @ 7am”  for our hallmark CRBF breakfast function –  in particular “a brick of Bundaberg Rum”, I sat for two minutes with the words to “killing me softly “, playing in my mind, eyes roaming the room looking for imaginary thought bubbles. “Where is she keeping that hip flask?” “Did the staff actually serve her coffee in that cup?”

Mitch I know you choose my retirement home, but you skipped a step – I choose where your inheritance goes.

There is a more serious note for today’s post.  CRBF would like to wish all the remarkable mother’s and significant others, joy, peace of mind, time with your loved ones, and a special day making special memories.  It is a day when we remember and honour those whose Mother’s Day will never be the same, as their child or indeed their mother no longer walks beside them.

To those mums, this day will always be met with a multitude of mixed emotions. A stark reminder of a perfect life forever altered.  Mother’s Day is a day to surround yourself with those who matter most, to do something simple that brings joy, or to simply march to the beat of your own drum. There is a no size fits all solution to these special days in the calendar.

Whatever form Mother’s Day takes for you, we send our love to each of our mums, & thank you from the bottom of our hearts for the difference you make in our lives.

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Karen Simpson and Jo Capp are remarkable mums with equally remarkable sons.

Both Karen and Jo-Ann stood by their son’s sides every step of the way, from the day of  their respective sarcoma diagnoses, throughout savage treatment regimes, and beyond.  Neither missed a beat.

With Mother’s Day fast approaching, it is timely to remember those mums whose lives have been impacted by tragedy of varying degrees, and to hold them in our thoughts and in our hearts.

Jake’s story

In the words of his mum, Karen Simpson

Jake Simpson was a normal sport mad young man living a normal life, when his life changed irreversibly.  Jake was diagnosed with cancer on 12th December, 2012.   On Christmas Eve in a further bitter blow, that cancer diagnosis was confirmed as Ewing Sarcoma.

Jake commenced treatment on Boxing Day, and was given the daunting prognosis of a 25%chance of survival.

The cancer was first located in Jake’s spine, hip and chest plate when the initial cancer diagnosis was made, and by Boxing Day,  it had metastasised to his collar bone, shoulder, and throughout his skull and bottom.

Chemotherapy initially worked, and in August Jake had a stem cell transplant and by October the family were informed he was in remission. For 15 months he lived normally celebrated his 21st birthday and continuing to reach all medical milestones.

Early January 2013, he complained of a sore back and on Australia Day it was confirmed the cancer had returned, this time no chance of survival unless a cure was found.

November we were told he wouldn’t see his 23rd birthday after chemo and radiation it just wasn’t working. 12 weeks later on the 17 February he closed his eyes.

Jake never once complained  and never asked why?  He started a bucket list,  and those last 10 weeks he had adventures with his family. Unfortunately the sarcomas on his spine paralysed Jake and he was bed ridden for the last few weeks of his life, which according to his mum Karen, “annoyed him”.

Jake fought courageously, but that cure just didn’t come.

Today these woman honour their sons with the tireless work they each do to advance sarcoma awareness and funding, despite the hand of cards they have each been dealt.

Reid’s story 

In the words of Jo-Ann Capp, Reid’s mum

Reid’s diagnosis of Ewing’s Sarcoma came when he was a month off turning 6 and it was incredibly life changing for all of us. Occasionally he complained of a sore leg. We put it down to growing pains.

On May 21 2007  we were told he would be facing massive doses of chemotherapy, perhaps some radiation on his lungs, the loss of his right tibia with only a 30-60% chance that he would live.

We got through all the treatment then due to having his tibia removed and replaced with his left fibula Reid went on to break this leg 14 times over the next 10 years. He spent his entire childhood until he was 16 in either a cast or with an Illarzarov frame attached to straighten or lengthen his leg.  He is a pretty resilient little bugger, and not too mention a demon on crutches!!

He is now 19 (nearly 20) and enjoying everything a young man his age can do!  He is at University in Brisbane studying to be a teacher and loving his freedom living away from the watchful eyes of his parents!

As if this process was not enough?, Jo-Ann went on to write a book, Four Hot Chips – “One family’s story of childhood cancer, love and how they survive, and how they nearly didn’t”. The book is now available through Audible, by following the link below:

https://www.audible.com.au/pd/Four-Hot-Chips-Audiobook/B086WQ7368

CRBF and the sarcoma community wish to extend our sincere gratitude to both Karen and Jo-Ann for their courage, and for their unwavering dedication to funding a cure for this insidious cancer.

International Childhood Cancer Day (ICCD) is a global collaborative campaign on the 15th February, to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. (ICCD, 2021)

Every year, more than 400,000 children and AYA’s are diagnosed with cancer, with Sarcoma accounting for up to 20% of these diagnoses.

As the sun sets on the 2021 ICCD, we recognise and silently support those young patients and their families walking this road, and cherish the memory of those whose lives have been lost.

We thank those remarkable individuals and organisations who are immersed in childhood cancer. From the dedicated paediatric, and adolescent and young adult, nurses, specialist support staff, and medical oncology teams, to the passionate researchers working tirelessly towards a cure, the state and federal governments for their ongoing commitment to advancing children’s cancer research, and finally, the not-for-profit organisations, often driven by personal and devastating loss, which help support the research into a cure.

Each of these bodies and individuals has an equally important role to play, as we strive collaboratively to find a cure for all childhood cancers.

Associate Professor Paul Craft has been acknowledged for his dedication and commitment to oncology and professional organisations, in the Australia Day Honours list, awarded a Member of the Order of Australia (AM).

Professor Craft has a special interest in sarcoma, and forms part of the ACT region’s Sarcoma Multidisciplinary Team.

Since 1988 Professor Craft  has contributed significantly to Australian medical committees, councils and organisations including the ACT Health Research Ethics Committee, ACT Cancer Council, Royal Australian College of Physicians, and the Clinical Oncology Society of Australia.

Today, we sadly farewelled (Dr) Matt Fisher at a beautiful service in Canberra. Matt tragically lost his life to sarcoma on January 8.

Professor Craft was Matt’s oncologist and there was never any doubt how highly Matt regarded this very special man.

Matt was a scientist and understood well the hard work, experience and dedication it takes to make a significant footprint in a gruelling speciality such as oncology.  

From all at the Cooper Rice-Brading Foundation and the sarcoma community, we extend our heartiest congratulations to Professor Craft, AM, and our deepest gratitude for the profound difference he makes in the lives of cancer patients.

YOU CAN STAY is an initiative of the Sony Foundation, and provides emergency accommodation for rural teenagers with cancer, and their families, enabling them to travel to the city for life-saving cancer treatment.

The Sony Foundation provides this service at no cost.

Each year the Sydney Sixers join with the Sony Foundation to raise funding and awareness for this outstanding cause, and this year, CRBF Ambassador Jack Gibson, was interviewed with long time friend and team mate Hayden Kerr, together with Captain, Daniel Hughes to promote the game which took place on Saturday 16 January, 2021.

As a significant portion of these young patients are living with a sarcoma diagnosis, we extend our sincere gratitude to both the Sony Foundation and the Sydney Sixers for the work they have done and continue to do, in making the lives of young rural cancer patients and their families, just a little less stressful.