The long-term risks associated with the treatment plan Nina’s oncologist and radiology oncologist put forward, after her surgery, caused Nina to stop and think very carefully about the way forward. The more she read, the more she came to understand that these treatments were only a stop gap. A measure that would extend her life a little – but not take her far enough into the future to see her girls become young women.
As Nina healed from the surgery that removed most of the tumour that held her life in balance, Nina embarked on a new way of life…that of fasting, a change in her nutritional approach, the lifestyle choices she and her family made and a complete overhaul of the environment in which they lived. And this set her off on a path that was to benefit Nina’s ability to remain incredibly well. This was a courageous decision because little data existed that could indicate how well a patient would fair without allopathic treatment.
Fast forward two years and the tumour was still growing, albeit slowly.
Nina is one of those people who lights up a room. Despite her own health challenges, she is always one of the first to offer help and support wherever she can. It was no surprise then, that at this juncture of her journey friends and family, from around the globe, were seeking for ways to show their love of this gentle, funny, mischievous, shining beacon. And so, after her second surgery, everyone rallied and raised the funds to enable her to go to Verita Life Clinic in Thailand. This is a cancer centre that offered an integrative approach that married the best of allopathic oncology with immunotherapy and a focus on supporting the emotional needs of their patients. An approach that wasn’t available in Australia in 2015. This treatment, for the first time, halted the progression of the tumour.
Three years on from Nina’s initial diagnosis, she experienced a second seizure. The scans still showed stability - there was no explanation as to why the seizure had occurred. It could have been that the tumour was breaking down…but no one could say for sure. Nina’s clinical oncologist encouraged Nina to reconsider chemotherapy and radiation therapy again. The results of a trial using a combination of a protocol known as PCV Chemotherapy and radiation had been very promising, extending the life expectancy of Oligodendroglioma patients to 14 years. This gave Nina the hope of seeing her girls into adulthood. After serious consideration, Nina decided to trust the results of the trial and so began her treatment in September 2016.
Nina’s body, however, had different ideas! After her radiation treatment was completed, Nina found she was unable to continue with the chemotherapy protocol. Her body couldn’t tolerate it. After four months, her oncologist advised Nina that the risk of continuing the chemotherapy protocol was too great, and treatment ceased.
Unexpectedly, Nina’s MRI at the end of 2016 revealed that her tumour had gone. Yep…GONE!!! No one expected this to happen. Over the course of the next three years, every scan that Nina had revealed, “No evidence of new or residual disease.” Today, this is still the case with regard to Nina’s initial Oligodendroglioma tumour.
And here we are! On our way to Sydney…2020 has certainly been an interesting, challenging year for everyone. But for Nina and her family, there has been another layer to contend with.
In April of this year, Nina’s 6 monthly, routine MRI, picked up a new tumour in a completely new area of her brain. And it was growing…fast! Nina’s original surgeon deemed it inoperable due to the location, deep in the middle of the cerebellum…just above Nina’s brain stem. Chemotherapy wasn’t an option and so all that could be offered, here in Western Australia, was radiation treatment.
For anyone that is not aware, Karen (Nina’s friend) and Nina had planned to cycle across Australia to raise awareness and funds for the Charlie Teo Foundation. This is a research foundation close to Nina’s heart. Charlie Teo is a world-renowned neurosurgeon who, when in Australia, operates out of Sydney. If he were the lead singer in a band…Nina would be there…at the front of the mosh pit at his feet! A referral from Nina’s GP to Prof. Charlie Teo lit the way to a video consultation with him just a week ago. A completely different conversation developed, and for the first time in four months, Nina and Tim had hope.
Despite the severity of the tumour – most probably a grade 3 radiation-induced astrocytoma…yes, a tumour that has developed because of the very treatment that was supposed to extend Nina’s life potential to 14 years...Prof. Teo was willing to operate. There are significant risks…but because of Nina’s good physical health and positive mindset, Charlie is confident that Nina stands a good chance of making an excellent recovery. But the surgery is urgent.
The past seven days have been a whirlwind. The cost of such treatment is estimated to be AU$100 000…with Nina having to make an $80 000 payment to the hospital prior to surgery, her friends and family have come together to do all they can to help. Hopefully, Nina will be able to draw on her superannuation to cover part of the cost of this life-saving surgery. Friends are planning a number of fundraising activities and family and friends have pooled together resources to help Nina take the flight to Sydney for her operation on Monday 24th August.
There is a tremendous gap of $50 000 - a lot of money to find at a time when COVID restrictions limit what we can do and so if you are able to donate whatever you can to assist Nina and her family, we will all be truly grateful.
Tim, Hannah, Karen, Deb, Nicky, Carene, Suzie, Liz and Cecelia
(AKA Nina’s Ninja Fundraisers)
DonationsSee top donations
- BRYCEN GODFREY
- Gayle PT
- Simon Cunliffe
- Mel Turness
Organizer and beneficiary
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