My Sister. 3 times rare as the sparky unicorn with a chicken hat with a bow.
As most of you would know my sister in the last 8 months had fought a third round of her rare cancer.
After some unusual headaches in late May, Bron requested a brain MRI and unexpectedly, they found a tumour inconveniently close to the brain stem.
Bron's incredible team at Peter Mac mobilised like the crack squad they are and had her quickly lined up with the neurosurgeons at Royal Melbourne Hospital.
June was a slow whirlwind of appointments, consultations, scans, she was incredibly brave to have a tricky brain biopsy (another scar!) and an excruciating two week wait for results to find out that it was a metastasis (ie spread) mutantion of the existing sarcoma (Malignant Peripheral Nerve Sheath Tumour).
As Bron famously said while waiting in the ward for her brain tumour biopsy, "Sometimes you need to just put a bow on your chicken hat and get on with it"
*NOTE this became a a regular statement during this last process and along with a matching meme, adjusted photos to incorporate chicken hats, laughter, our weird family sense of humour. Then through my obsession to finding us chicken hats, Bron with her knitting talents, spent recovery knitting chicken hats for us in support, so watch this space for photos.
Treatment was quickly arranged of just 3 intense don't mess around sessions of “Gamma Knife” radiation.
Mum, Dad and I dropped everything to be by her side to help, support when she needed it, didn't need it, and sometimes in between of just your not alone.
I'm unbelievably proud to be her sister and to spend that time with her in Melbourne as her support person during the tricky period.
It's a wonderful honour I will cherish being there for the tea, cuddles, tears, weird us jokes, singing, the "fuck this we are drinking sherry tonight! ". It was scary at times, the surgery recovery, the waiting of results, talking to Drs, asking questions, driving around Melbourne.
But do you really know how amazing my sister is?
Bron since cancer #2 volunteers at Peter Mac hospital for cancers in Melbourne. She can be a support person for someone or a family member that has just had an admission to Peter Mac for treatment.
She works with other volunteers preparing donated gifts of care packages to new patients or families with extended stays so that is one less thing they have to think about.
Did you know Bron continued this during her radiation treatment and #3 diagnosis? Yep she is that amazing and selfless.
I was incredibly overwhelmed by the love staff and volunteers had for Bron.
She brings laughter, experience calmness and a whole world of hope to what frankly is a shitty situation she did not ask to be in.
Bron opened this world up to me, introduced me to the people that hold her up when we are not there, and I even got to contribute in helping make care packages.
Then while we were waiting for the Gamma Knife radiation to work, Bron in September took the Rare Cancers CanForm as an advocate to make Rare Cancers Personal. Fight for treatment equality.
To fight this government to subsidise proven to work treatments for rare cancers so families do not have to choose to fundraise from $10,000-40,000 per month to have a chance to fight with a medicine that works or to not financially burden their family. All because for example their Breast,or Bowel or other form of rare cancer is slightly genetically different to the one signed off for financially supported treatment by the government. Their cancer is still breast or bowel cancer, the medications and the therapy have the same success as someone with 'common breast cancer', they just got unlucky getting the 'wrong type' of cancer.
I sat next to Bron at Parliament House listening to genomic testing and how the treatments can be improved by immunotherapy and specific treatment for you and not a one size fits all.
I listened to the real hero's working so hard to save lives with science. The Drs and the pharmaceuticals who are doing this to cure cancers and save lives. Why, because for cancer it everyone is personal.
Bron took me into her world and I of course jumped in and became a Rate Cancers patient advocate.
In good news...💛
In December, follow up scans showed the "Fucker" as I call it is dying like it should. No signs of spreading which is what her form of cancer likes to do. Bron is back on track fighting this thing, kicking ass again with the help of the team.
So, for those who don't know, or had the privilege to meet yet, this is my sister Bron.
This is who I/ we are climbing Mt Kosiosko for in March.
As described by the rare cancer drs, a rare sparkly unicorn in the cancer field. With her rare cancer being a rare form of the rare cancer, topping it off with our sparkles to challenge the sarcoma team with a mutation of the rare, rare cancer. The one who is rewriting books and creating opportunity and hope.
Are you lucky to have had Bron be apart of a chapter in your book?
It could be a line in a your book of this moment of being touched by her accomplishments through this post.
It could be a line in your book of meeting her briefly.
It could be a paragraph of a joint gathering.
It could be a chapter or two from school or our movements from moving states.
It could be chapters of our holidays at Kioloa where we turned teens to adults together as a gang.
Or you're lucky enough to have had her in every chapter through family.
If you are interested in donating to Rate Cancers Australia, Please see the link.
No pressure, just appreciation of support which ever way is best for you through words or donation or both.
Always giving and caring for those around you. We are all better for knowing you!