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Wednesday 19th Feb Update: With your support, Brodie has now travelled to Switzerland for proton beam treatment - a type of radiation not yet available in Australia. His treatment went well and Brodie is home awaiting a follow-up scan. On behalf of Brodie and his family, thank you for your donations that have helped make this treatment possible. Update: Mtop have since approved Brodie's application to receive Proton Beam therapy in Switzerland My son, Brodie, aged 21yrs old, started having vision issues back in September 2022, which led him to book in to get his eyes tested. Brodie was then referred to see an eye specialist as there was something picked up in the examination. Upon seeing the eye specialist, he said that Brodie has Palsy of the right eye and needed to go straight to the emergency department for urgent review. After MRIs, CT scans and blood work, a week or 2 went by and Brodie was called into the hospital to deliver the news that they in fact, had found a mass sitting just outside the brain behind the right eye and that he would need to see a neurosurgeon. An appointment was made for the same day and then we were told that surgery (craniotomy) would need to be performed to obtain what the mass was. The Dr advised he had his suspicions as to what it was but didn’t want to say anything until it was confirmed. The surgery was booked in for 20/10/2022, the day after Brodies 21st birthday. The afternoon before the surgery, Brodie received a call confirming they were cancelling the craniotomy as they believe there is a less invasive way and would need to speak with an ENT surgeon. After being referred to an ENT neurosurgeon, he advised he was able to perform the biopsy, but it would be at a cost of $50,000. We were so shocked about the cost but didn’t have this sort of money lying around just to perform this biopsy. We then went back to the original Neurosurgeon, who advised of another surgeon and arranged to speak with Dr Bhrinda Shivralingham from Chris Obrien Life House, who saw Brodie within a week. She confirmed she could perform the surgery alongside an ENT to obtain some of the mass for biopsy. But given the location, they wouldn’t be able to get all of it out. This was at no cost at all. The surgery was booked and went ahead on 23rd December 2022. Surgery and biopsy went well, and Brodie was home on Christmas day to recover. Then the long wait for the biopsy results. It was a six week wait when we received the call to confirm Brodie's diagnosis of the Chondrosarcoma skull base in the right cavernous sinus lesion. It has been graded 2/3. This is classified as a rare, aggressive bone cancer. And the recommended treatment would be Proton Beam Radiation, but unfortunately, this is not available in Australia. There is a centre being built in South Australia but it won’t be ready until early 2025. We were then referred to Dr Patanjali, who is now Brodie's oncologist, and she also has confirmed for the best long-term treatment, Proton Beam Radiation is what is needed to treat Brodie. She explained the difference between Proton V Photon (Photon is the treatment that is offered here in Australia.) Proton is a direct hit with a high dose of radiation to the tumour, whereas the Photon releases a high overall dose to the whole area, in Brodie's case is the brainstem optic nerve which could cause more damage and other areas of the brain. Due to Proton not being available in Australia and we were advised we could apply for financial assistance through MTOP (medical treatment overseas program). SO Brodie could travel overseas to have this life-saving treatment. There is a centre being built in South Australia but it will not be ready until 2025. Dr Patanjali has spoken with PSI (Peter Scherrer Institute) in Switzerland, who confirmed they were able to treat Brodie using a proton beam and put together a treatment plan for Brodie. Dr Patanjali also structured a treatment plan using Photon so the plans could be submitted with the application to MTOP. After several weeks and back-and-forth emails between MTOP and Dr Patanjali with further questions, they released an email on Friday, 14th July, advising they had declined Brodie based on him not meeting all four criteria. The criteria Brodie doesn’t meet is this: A) the proposed overseas treatment or an effective alternative treatment must not be available in Australia in-time to benefit the applicant. Yet there are multiple statements in the letter that outline the benefits of Proton treatment would be to Brodie. One view stated that proton beam therapy is not available in Australia and is a recognised indication for base of skull chondrosarcoma. It is very reasonable to ask for a PBT opinion for this disease in a young man. In principle PBT is accepted for this disease. The two reviewers expressed opposite opinions on three of the four criteria, however the patient has an indication for which MSAC 1638 acknowledges proton therapy and for that reason as well as the fact that this young patient may well have a better outcome if treated at an international centre of excellence for these tumours, the College supports referral for proton therapy Another view stated that the patient is 21, otherwise well, with a partially resected skull base chondrosarcoma arising from the right parasellar area and involving the right orbit. Biopsy and surgery have confirmed the diagnosis but excision is not complete, as is usual with these tumours, as they invade critical normal structures. He has been assessed by PSI and recommend treatment to a total dose of 70Gy in 35 fractions. RANZCR. The PSI data is consistent with other series with an 8-year overall survival of 94% and a local control rate of 90%. His young age and the relatively small volume of residual disease put him into a favourable category. The comparison photon plan provided by Lifehouse is good but cannot avoid high doses to vital structures such as the optic nerve and chiasm, other cranial nerves and the brainstem. A scanned proton plan such as would be delivered at PSI will give lower doses to many of these structures, and this is particularly important in such a young patient with a good prospect of long-term survival. I am lost for words as to the amount of times I have read throughout the decline letter how many people were in favour of the treatment and how this treatment is the most effective for this sort of cancer, given the location. Yet financial assistance will not be approved? Dr Patanjali will be appealing the decision as she believes this is the best long-term treatment for Brodie, but this process can take up to 3months. It has already been 9months since the tumour was discovered. So now we look at plan B options and that is to fund the treatment ourselves. We are hoping that Brodie's story can be shared to spread the word of helping my son get the treatment he deserves that will give him the best option for long-term life. ShareThank you to my Sponsors
$9.5k
Rca Transfer
$2k
Paul Hopper
wishing you all the very best in your treatment
$850
Warren Long
$500
Bhavdip Sanghavi
Good Luck for the treatment
$500
Capital Transport Nsw
$500
Daniel Shannon
$500
Justin Durham
Praying for healing by our Lord Jesus Christ
$300
Jill Crow
Wishing you well. Jill and Les Crow
$300
Sean Mccarroll
Thinking of you. From Sean and Christie McCarroll
$250
Richard And Kate Vines
With our very best wishes. Stay strong.
$250
Chris Mears
$250
Bud Fox
Get well mate, Bud Fox
$250
James George
$250
Phil Mason
$200
Talisa Whybro
$200
Tolulope Adetunji
$200
Alto Capital
$200
Bardfield Engineering
Wishing you all the very best Brodie
$200
Johny Jatinder Singh
God Bless you Broadie , Get well Soon
$200
Tanya Schindler
Good luck and get well Brodie!
$200
Jorge Ismodes
$200
Rca Transfer
$150
Sunny Singh
$100
Hollie Harpum
$100
Gabrielle Dooley
$100
Zac Sternberg
$100
Helen Davis
$100
Alice Leivere
Sorry to hear what your family going through. Sending you prayers of hope & strength during this time
$100
Ruairi Toale
$100
Ryan James
$100
Dee Locantro
Wishing you all of the best of treatments 💕 Dee and Lachie Locantro
$100
Graham Robinson
Good luck Brodie!!
$100
Rca Transfer
Hang in there Brodie and family, I hope you pull through. ID
$100
Rca Transfer
$100
Rca Transfer
$100
Jsin59 Jsin59
$100
Ralph (@ilzenberg) Ilzhoefer
$100
Achin Jain
achin jain
$100
Carmel O'brien
Best wishes Brodie- everyone deserves access to the best treatment option available
$100
Russell Johnson
Best wishes Brodie.
$100
Sarah Payne
All the best, from willows class mate Evie.s x
$100
Joanne King
$100
Craig Hamrol
$100
Andrea Precians
Good luck Brodie
$100
Natali Paulis
God bless
$100
Roslyn Queitzsch
Brodie I hope you get enough money to help with treatment. Sending healing to you and your family.
$100
Michelle Mcdermott
All the positive healing light for Brodie ✨️ 💛 💖
$100
Simon Shepherd
$100
Lucas Cunningham
Good luck
$100
Sue Marriott
Best wishes Brodie xxx
$100
Carey Churnside
$100
Eileen Gibson
$100
Les Mccabe
Good Luck Brodie
$100
Rca Transfer
Good luck Brodie, I have a rare cancer also but I have been able to access life saving treatment in Australia with the strength of love and the community I hope you can also get treatment to support
$100
Dr Peter Laniewski
We wish you all the very best for a full recovery . Laniewski Family
$100
Penelope Jones
Good luck Brodie!! I sort of know what you are going through, my soft tissue/bone sarcoma is not near my brian. Take care xxx
$75
James H
$50
Lachlan Alexander
Frank & Chantal sorry to hear what you are going through hope all works out for the best.
$50
Michelle Lynch
$50
Rca Transfer
So Sorry to hear what you are going through.
$50
Rca Transfer
$50
Stephen P
BEST WISHES and GOOD LUCK
$50
Tom Jennings
Hoping the treatment come fast for you. All the best.
$50
Rojo Emergency & Safety Training Pty Ltd
Good Luck
$50
Ex Tony Locantro
Hang in Brodie !
$50
Rca Transfer
Get better soon
$50
Mark Chan
$50
Marcus @marcusmeansmars
Wishing you the luck and treatment you deserve Brodie!
$50
Jim Merrigan
Good luck Brodie!
$50
Upendra Narsingani
Good luck and Get well soon!
$50
Kim Walsh
Keep fighting Brodie.
$50
Kristina Caradonna
Keep fighting Brodie!
$50
Rca Transfer
$50
Mervat Napoli
$50
Joey Davils
$50
Mark Reid
$50
Jessica Simon
Sorry to hear Frank & Chantal, good luck Brodie
$50
Grace D'antino
Fingers crossed for you Brodie
$50
Grahame Chambers
$50
Nick Tsitses
$50
Tania Tette
Praying for healing
$50
Rca Transfer
$50
Rca Transfer
Good luck
$50
Rca Transfer
$50
Fadilla Khalil
$50
Rca Transfer
Hey bro, it's moiz from high school So sorry to hear what's happening man ❤️hope everything works out
$50
Nahren Georges
$50
Liam Newham
I'm sure you'll make a speedy recovery. You got this man 🙂 Best wishes - Liam
$50
Maggie Pearce
Wishing you all the best Brodie
$50
Andy Ngo
$50
Rca Transfer
$50
Allison Tebble
$50
Jessica Reason
$50
Kim P
$50
Margaret Isabella
$50
Rca Transfer
$50
Rca Transfer
$50
Michael Kavanagh
$50
Polyx Global Pty Ltd
Chin up, you'll beat it.
$50
Margaret Clougher Clougher
$50
Lyn Mcmahon
$50
Kelliann Chardon
$50
Stephanie Zamor-bongout
$50
Marc Barnes
$50
Rca Transfer
$50
Simik Projects Qld
The amount of government red tape is heartbreaking. Good luck
$50
Camilla James
Good luck Brodie!
$50
Linda Southern
$50
Rca Transfer
$50
Margaret Kulig
Best wishes
$50
Jo & Paul King
All the very best with the treatment
$50
Twyla Rawenata
Sorry I’m late Brodie! But here is a little something that may help you! Sending you all my blessings on a speedy recovery! From Twyla
$50
Sue Mcmurtrie
Hoping you get the treatment to give you the best chance in life x from a mum who has just lost her daughter to osteosarcoma
$50
Mike Smith
$50
Marie Evans
I hope you get the treatment you need 🙏🏻. Be brave, be strong 💪
$30
Jennifer Lu
Stay strong and all the best 🤞
$25
Rca Transfer
$25
Rca Transfer
$20
Rca Transfer
$20
Mickaela Highes
$20
Rca Transfer
$20
Rca Transfer
"Rack off Cancer"
$20
Rca Transfer
$20
Sumit Agrawal
$20
Rca Transfer
$20
Donna Battams
Get LOUD with our useless Australian government! Hope you get the treatment our government is too negligent to supply.
$20
Gabriella Rossi
Best wishes Brodie & Speedy recover !!!
$20
Rca Transfer
All the best
$20
Maria Bonaccorsi
$20
Cristina Negron
Im sorry this is not enough 🥺 is the best I can do at this moment. I hope you guys reach the goal and that Brodie can live a long life ❤️🩹
$20
Rca Transfer
In Jesus name, we wish healings upon you 🙏🏻
$20
Rca Transfer
I hope this helps
$20
Rca Transfer
$20
Rca Transfer
$20
Jotika Kelty
$20
Rca Transfer
$20
Rca Transfer
Good luck! Prayers, love, best wishes and everything crossed for you
$10
Rca Transfer
$10
Angela Shepherd
$10
Rca Transfer
$10
Ros Dare
$10
Michelle Cox
$10
Rca Transfer
$5
Rca Transfer
Hi I’m sorry I havnt got much im only 16 but I hope this does help
$5
Jillian Francis
Hi there Brodie and family, I am so pleased you have received treatment. Can you please email me, as I would truly appreciate seeing MTOP decisions. It is jilly.francis@gmail.com. Similar situation!
$3
