A very sad goodbye to Ahuaiti Stockman

This has been an unspeakably difficult week for the sarcoma community with the ripple effect reverberating nationally. So many friends and family hurting and living with the pain of the loss of a loved one.

We sadly share the news of yet another family in our community who this week mourn the loss of their beloved wife and mother.

Australians are known for their generosity when others are in need, and this was evident by the way in which they wrapped their arms around the stockman family in July. This is when it was discovered both mum Ahuaiti and son Jordan were living under very difficult conditions with advanced metastatic cancer.

Ahuaiti sadly passed away on Monday night, surrounded by her cherished family and more love than could be imagined.

Today, the family farewelled their precious Ahuaiti in a magnificent service, celebrating their Māori culture.

We send our love and strength to husband Darrin, Jordan, Jovan, Cullen, Corey, Kaelis, and Kye-Jana together with extended family.

Friends for life – Noosa Triathlon

Today, a team of remarkable young men and women, completed the gruelling Noosa Triathlon in honour of their dear friend Jack Gobson raising well over a staggering $27,000 (and rising) for sarcoma patient support in Australia.

When the team first set out – their target was a very respectable $5000 or alternatively 200 donations which today stands at 230 averaging at $120 per donation.

Poor Man’s Everest was the brainchild of Jack Gibson, lachie Mactier, Hunter Hordern, andAngus Joyce, however the boys were joined today by Hugh Jameson, Emma Duncan, Will Gyles, Lucie Holden, Siobahn Shaw, Tom Molloy, and Dylan Boakes.

This month, this team have funded the following:

Travel expenses of a patient travelling to and from treatment ($6150)
Subsidising medicare gap payments – ($1950)
Fertility procedures and egg preservation – ( $8500)
A mobile phone and plan for 12 months for a young patient forced to spend weeks in hospital without connection to his friends and family- ( $2341)
Grocery and petrol cards for a sarcoma family struggling to make ends meet ($700)
Clinical supervision for the Fergus McCulla Psychological Support Programme ($1600)
Leaving a surplus of $5700 to be directed to patients and families in November.

How do we even come close to thanking this outstanding group of young friends competing in honour of a young man we all hold in the highest regard?

Wishing a special man a very special day

Happy Birthday “Wippa”!

To the man who will stop at nothing to raise awareness (and funding) for sarcoma in Australia – even partaking in an impromptu Brazilian wax courtesy of a plaster cast during Celebrity Apprentice – all while on national tv .

We are forever in your debt.

Happy birthday Wippa, the next wax is on us!…

Also an appropriate way to see out September – childhood cancer awareness month.

The Wipfli family Sarcoma Research Fund was named in honour of Wippa’s eye-watering win in the first Celebrity Apprentice challenge in 2021 which together with The Kids Cancer Project brought hope for young sarcoma patients nationally with the inception of the phosphoproteomic paediatric AYA sarcoma clinical trial at the The Children’s Cancer Institute.

We wish you a magical day that is as special as you are to so many.

Photographs courtesy of Celebrity Apprentice Australia.

Anya’s Wish 19 for 19 Challenge

Ethereal & spectacular are just two words that spring to mind after watching the sunrise this morning as it peeped through the fog in the Armidale highlands – the venue Kenwood Park owned by the Coffey family.

A picture perfect morning marked a wonderful start to the annual 19 for 19 Challenge, raising critical funding for osteosarcoma research.

The remarkable @liziegan, Will Winter and children Alex, Alice, Annie, & Hugh host this event in memory of their beloved daughter/sister, Anya who lost her life to osteosarcoma in September of 2020.

This challenging 19km event represents one km for every year of Anya’s brief life, and takes on some of the most breathtaking scenery imaginable as seen in the attached photos.

Today the Armidale community wrapped their arms around this very special family resulting in an extraordinary turnout. Those making the effort were richly rewarded with breathtaking surrounds and a simply glorious day, in the knowledge that every step was a step closer to curing osteosarcoma.

While final counting is still underway, expectations for this event lie upwards of $220,000 which is utterly incredible! It will also provide much needed hope for the future for osteosarcoma patients .

Thank you to those very generous donors who backed Colin and I finishing – we are happy to report we are in one piece and sadly about to leave this magnificent region.

Funds from this event have been directed to osteosarcoma specific research, the work of Dr Emmy Fleuren at @childrenscancerinstitute who also oversees research for the CRBF sarcoma specific phosphoproteomic trial, funded by the generosity of @Wippa1 whilst on Celebrity Apprentice Australia.

We would like to thank Anya’s amazing family, the Armidale community for their warmth, Rydges Hotel Armidale for their hospitality then allowing us to clean off the mud ready for our flight home, Tour de Rocks for their outstanding organisational capability, and @tasarmidale whose students provided a lot of light entertainment along the way.

Should you wish to donate, go to link in bio.

Photos courtesy Simon Scott.

In memory of Dr Matthew Fisher

Louisa Gunning is a student at ANU, studying history and maths. She also works as a swimming teacher for children, but Louisa is no ordinary 20 year old university student. She is planning to shave her beautiful head of hair for the second time for cancer – this time to advance research for sarcoma.

The cause is personal – her cousin Naomi Chun lost her husband to rhabdomyosarcoma in January of 2021. Naomi has two young daughters three and six, and despite her remarkable approach to life without her much loved husband Matt, she is left to contemplate each day without the man she married only five short years prior to his sarcoma diagnosis.

The fund set up in his memory, Dr Matthew Fisher Sarcoma Research Fund has raised almost $100,000 for the IL23 sarcoma specific sub study, at the Garvan Institute of Medical Research, and this time Louisa will be directing funds to Phase two of this clinical trial.

On behalf of all those living with a sarcoma diagnosis in Australia, we wish to thank Louisa for raising much needed funding for high level sarcoma research in Australia, and raising awareness in an effort to promote early diagnosis of this cancer.

To support Louisa go to https://donorbox.org/in_memory_of_matt

It takes a village, & CRBF has one of the best

Past weeks have seen a remarkable group from the AFL, the Sydney Swans, MCC members and AFL Cares, join forces to produce a Grand Final experience for an extraordinary family.

The heartiest of thanks to CRBF ambassador & all-round good guy Paul Roos, one of the nicest men in football Swans CEO Tom Harley & Ops Mgr the exceptional Amanda Turner, both going over & beyond, the fantastic Bec @ AFL Cares whose efforts leave us without words, the wonderful Holly Baker @ MCC Members & dear friends of CRBF, Carolyn Kay, Ange Croft and & Amy Parmenter.

This remarkable group conducted a masterclass in getting the job done. All were working ridiculous hours continuing well into today. Their dedication to helping us with this very special cause is humbling.

We extend our deepest gratitude to Ilan Weill, GM of Hyatt Centric Hotel Mel, Indya Dwyer & Louise Alford together with Hyatt centric Melbourne. CRBF has a long-standing association with Hyatt Hotels, & once more they have gone over and beyond to assist.

We wish the Swans all the best for today, acknowledging they provided the icing on the cake by digging deep to make it to the GF.

This is a side that is as truly remarkable on the field as they are off the field. A side that gives back to the community in so many ways.

CRBF has been one of those recipients over many years, & it’s a connection we hold close to our hearts. We would like to thank Cooper’s junior AFL teammate Nick Blakey, Captain Callum Mills, Harry Cunningham, and Tom Papley for the work they have each done over the years to heighten awareness of sarcoma in the Australia. We also recognise the wonderful friendship that existed with Manager Football Operations, Peter Berbakov, former captain Stuart Maxfield, & Coach, John Longmire.

It would be remiss to overlook the fabulous Gary Rohan who is now preferring the blue and white, to the red and white, however was a special friend to Coops when he needed it most.

Special acknowledgment to ABC 7.30 Report & Lesley Robinson for the precious footage.

The new MDT facility opens at RPA

We were delighted to be invited to the opening of the new MDT facility at RPA for the Bone and Soft Tissue Sarcoma Unit.

Equipped with the latest technology to enhance patient care, the facility is dedicated to the memory of Dr Annabelle Mahar, a much loved, highly respected and world-renowned member of RPA’s Tissue Pathology Department.

Sarcoma is an insidious cancer, treatments are complex and it is the leading cause of cancer related deaths in the 15 to 24 year age group in Australia.(AIHW)

Equipping our brilliant sarcoma trained specialists with the space and technology to collaborate in weekly MDT meetings is a critical component of optimal patient care for those diagnosed with sarcoma.

Today marked an important step forward, and with it, tangible hope.

Dr Teresa Anderson delivered the opening words, acknowledging the work of Dr Annabelle Mahar, whose name the centre proudly bears, together with an outline of why this facility is needed.

Dr Stephen McNamara, devoted partner of Dr Annabelle Mahar’s heartfelt speech today resonated with all in the room. A plaque commemorating Annabelle’s immense contribution to pathology at RPA sits at the entrance to this facility.

After an illustrious career that saw him a pioneer in sarcoma surgery in Australia, Professor Paul Stalley has now passed the baton to incoming Chair of the NSW Bone and Soft Tissue Unit , Dr RIchard Boyle, who officially opened the facility with well chosen words expressing the significance of this facility.

We speak for all those touched by sarcoma in thanking Dr Teresa Anderson Chief Executive of the Sydney Local Health District, and NSW Health for this investment in the future of sarcoma in NSW.

Chris’ story of a Desmoid tumour diagnosis

In June of 2020 I noticed a very hard lump in my biceps area. I ignored it as I go to the gym regularly. My best friend Drew is a representative level athlete and knew it was not a sporting injury. He pushed me to call my mum. She made me immediately go to the GP.

The GP was very good and organised an immediate scan and ultrasound for the very next morning. That was a very stressful time for me. I was relieved to find out it was not Osteosarcoma or Fibrosarcoma like they were concerned about. It was put down to a muscle tear. My mother was not convinced and requested an urgent MRI the next day. The result came back as a rare 3 in a million desmoid tumour. It was very confusing. I was told I needed systemic chemotherapy and had to be seen by a Sarcoma Specialist yet it was not normal cancer. Rather a chronic sub form of sarcoma.

The sarcoma surgical team at Chris O’Brien Lifehouse were excellent. They fast tracked everything to be safe and knew not to remove the desmoid as can trigger its return with a vengeance. The necessary surgical biopsy however triggered it. Sometimes desmoids can turn off so a wait and see approach can be useful at times. It was clear mine was growing however and luckily my mother was doing extra MRIs.

Desmoids behave like sarcoma in every way apart from they rarely metastasise. They are locally aggressive and grow like a vine eating everything in their way . As they are aggressive when in the head, neck or intra abdominal areas they can be deadly. They often do not respond to chemotherapy or radiation. Just like other forms of sarcoma.

I did not want to face amputation or a lifetime on and off chemotherapy. Radiation was also being repeatedly suggested despite globally being the last treatment option due to the medium term risks of a deadly radiation induced sarcoma. I was determined to find another way as was my mother, and we were not OK with the suggested further wait and see approach when it was clearly growing.

Luckily we found out about an Israeli trial by Dr Eldad Elkanave via the wonderful support of the DTRF in America, and we switched teams. I felt a sense of relief I cannot adequately describe once I changed. Interventional Radiologist Dr Glen Schlaphoff from Spectrum Imaging/Director of Liverpool Hospital Interventional Radiology and Dr Antoinette Anazodo from Prince of Wales Children’s Hospital changed my life. They gave me hope. They both have the most outstanding patient centred approach alongside incredible medical knowledge and skill-sets in their fields. They backed my wish to have TACE (chemo-embolisation) followed by cryoablation.

I have had five procedures to date. My tumour had grown from 5cm by 2cm by 3cm to 15cm by 9cm by 10cm before treatment started in February 2021 under my new team. Dr Elkanave was involved from Israel which I will not forget. It is now back down to 5cm by 2cm by 2cm. I am the first patient in Australia to do this and first globally to do this first line treatment  for my tumour type. It has allowed me to get on with life in between treatments without the harsh cardiac, fertility, mental health and immune related side effects on systemic chemotherapy.

I would not have completed my HSC or now be at University likely without my parents, Glen and Antoinette’s determination to help change the trajectory of desmoid patient treatment outcomes. Antoniette attended every appointment – even regular check ups with my lovely burns nurse Alison. Their Oncology nurses Fiona and Cathy are the best too. Glen is my hero for the rest of my life!  There may not be a lot of fancy advertising but Prince of Wales Hospital walks the talk when it comes to comprehensive Oncology care for their adolescent patients. Many others with my tumour type are now choosing the TACE and Cryoablation treatment pathway where feasible globally which makes me so happy. I would like to work with stakeholders to see Cryoablation covered by private health funds like it is in the USA and Europe.

Lastly, I know my medical journey is not over. A desmoid tumour diagnosis is a chronic condition. One must have a warrior attitude. The reality is I have many battles ahead to win the war. It is so confronting to sit next to other patients with more deadly forms of sarcoma knowing what that prognosis means. Cooper was the same age as me when diagnosed. His tumour was in the same location.

It is just not OK that Osteosarcoma and Ewing’s Sarcoma have not seen improvements in 40 years. I will help in any way to change this.  Any progress with one form of sarcoma helps another form. For Cooper, for every patient I sit next to on my check up days, for all the rare desmoid patients, and future sarcoma patients I wish for nothing short of a cure ASAP and better support while we achieve that.

I want all patients to have doctors that are patient centred, have sound consultation skills, are determined by nature, and up to date with the latest clinical knowledge. Explaining ALL options available and involving patients in decision making is also key. I want patients who do not have parents who are skilled researchers to have somewhere to turn to in Australia. Be it private or public ALWAYS seek a second or third opinion if concerned and look into trials.

Always remember what extreme talent we have in our Teaching Hospitals! –  Christopher Sabahi 2022

Superheroes don’t always wear a cape

“I believe a real-life superhero is someone who has extraordinary or superhuman abilities or skills. They are people who deserve our gratitude.

During my cancer journey I could name a few, however right at the top of this list is my oncologist Professor Stewart Kellie, the best of the best in my eyes.

After being diagnosed on my 12th birthday with high grade metastatic osteoblastic osteosarcoma, I thank the universe every day for Prof Kellie being assigned to me.

He told me that over the next few months things were going to be tough, I would lose most of the bone in my leg and would have to undergo many rounds of chemotherapy to beat this disease (no different to anyone fighting this hideous disease). But he also promised me that he would always tell me the truth, he would never lie to me no matter how hard his news was. That I had to trust him always and we would get through it all together.

He kept his promise to me, he made me feel so safe and protected and I knew he had my back.

I had a lot of time to think about things while being treated. How dedicated the doctors and nurses were, wondered what their families were like, and how hard Prof Kellie must have worked to become the amazing man he was. I was grateful for him from the beginning.

After many operations and many months of chemotherapy it was also Prof Kellie who delivered the news to me that I was cancer free and I was able to go back home to my hometown, some 300km from the Sydney Children’s Hospital at Westmead.

When Prof broke this news to me, you can imagine the relief for me and those around me. In our last appointment before we left that day Prof said to me “Molly, any more questions before you go?”. I said “Yes Prof I have one. You are one of my real-life superheroes, and I’ve always wondered what superheroes eat. Prof what did you have for dinner last night?”.

We laughed, he answered my question, and I was lucky enough to go home shortly after.

When I relapsed more recently it was again my superhero Prof Kellie that delivered the news after a routine scan. I knew it upset him too, but he again had the ball rolling and I knew I was in the hands of the best.

After my surgery, where they removed the sarcoma nodules from my lung, one of the first people by my bedside on the ward was Prof Kellie.

When I spotted him I burst into tears. Prof said “I’m glad I don’t have this effect on all my patients Molly” before my Mum said “Moll why are you crying, Prof doesn’t make you sad does he?”. I responded with “No he doesn’t. He makes me feel safe and I’m so glad to see him”.

And that why he is my superhero – he is extraordinary, he is so skilful and super, super clever. Regardless of the news he has had to tell me, he has always made me feel safe and he deserves my gratitude.

So, Professor Kellie, this superheroes week for 2022, I hereby rename you – Superhero Professor Stewart Kellie.

You are my real-life superhero and I salute you. Today, always, and forever.” Molly Croft

City to Surf 2022 – registrations now open

It’s been a long lockdown. Let’s not put those Strava efforts to waste – dust off the runners, and join CRBF on 14 August for the 2022 @city2surf !!

Have a great day completing the 14km course at your own pace, while contributing funds to CRBF Patient Support.

Whilst we are dedicated to finding a cure for sarcoma, we are equally invested in reducing angst for patients and families during their sarcoma journey. We tailor our patient support to suit the individual and whatever their situation calls for. Head to https://www.crbf.org.au/patient-support/ to find out more about this service.

To sign up to for the #city2surf and raise funds for this vitally important service, please head to the link in our bio!

We appreciate this can be a confusing process so if you encounter any issues please don’t hesitate to reach out.