My journey with cancer is neither short, nor a simple one, but here’s the overview: In March 2014 at the age of 14 years old I was diagnosed with Osteosarcoma; a tumour infiltrating the bone of my right humerus.
I received 9 months of intensive chemotherapy and underwent extensive surgery to remove the humerus as well as my rotator cuff, then being replaced with a metal prosthesis. The year of treatment took a toll on my mental and physical self but I was alive and was thrilled to be getting back to some level of normality.
Fast forward to 2017 and I was back to full health, or so we thought. A routine checkup showed abnormal blood test results and after further tests to investigate my doctor diagnosed me with Myelodysplasia Syndrome (MDS), a rare blood disorder, most likely caused by the chemo and radiation used to treat my initial Osteosarcoma diagnosis. A Bone Marrow Transplant (BMT) was required to treat the MDS.
Unfortunately none of my immediate family were viable to be my donor, so I received bone marrow from an unrelated donor. During the period before I was meant to have the BMT, a routine test showed the MDS had rapidly developed in the Acute Myeloid Leukaemia (AML), meaning chemotherapy was required immediately. After 4 rounds of chemotherapy, I finally received my new bone marrow on 27th April 2017. I spent the next 9 months in isolation whilst my bone marrow was able to develop to a stage where I would be able to safely be out in the big wide world. During this time another problem occurred.
In July 2017, I found my lymph nodes to be swollen, doctors found that there was an increased amount of B Cells, causing another malignancy. Lymphoma was treated with chemotherapy, which on bone marrow so young, is extremely rare. I spent almost a week in the ICU, when doctors were not sure I was going to make it.
Sophie aboard the Royal Flying Doctor Service
Finally in December 2017, I was able to leave isolation and return back to life. Having missed all of my final year of school and being freshly 18, I was ready to give life my all.
And that's exactly what I have been doing.
In October 2022, only weeks before my partner and I were about to leave on a year long trip around Australia, I started coughing up blood. Doctors found yet another tumour. This time it was Osteosarcoma but in my lung. Luckily the tumour was able to be treated surgically. Removing my left lower lobe, I recovered relatively quickly and my partner and I were able to leave on our trip with only a 1 month delay! Though it didn’t last long…
We made it as far as Tasmania. In December 2022, I started vomiting uncontrollably with the most excruciating headaches. I went to the emergency room at Launceston Hospital to receive fluids. Whilst I was there doctors decided that due to my history, they would like to do a MRI. Luckily they did because there was a 4 cm tumour in my brain. I was rushed to Hobart Hospital to undergo surgery to remove the tumour as I was at extreme risk of seizures.
The surgery was successful in removing the tumour, again diagnosing it as osteosarcoma. Just days before Christmas, we made the journey back to Sydney. In January 2023, I started the first of four rounds of chemotherapy.
With my scans now clear (April 2023) I am extremely grateful however am looking to do anything I can to never have another cancer diagnosis again. To get back to my travels and make the most of the life I am so grateful to have.
Sophie in hospital with her dearest dog
My doctor has strongly recommended I commence medication, a PARP inhibitor to perform a 'maintenance' role with the aim of reducing the risk of further turmours developing. He has reason to believe that this therapy will repair the damage within my cells. Arming my body in a way that will fight cancerous cells.
This drug is tried and tested, commonly used in Breast, Ovarian, and Pancreatic Cancers all of which the recipents receive the treatment as part of the PBS Schedule whereby the medicine is available to be dispensed to patients at a hugely Government-subsidised price, however because Osteosarcoma is so rare and my case is even more rare, the government has not approved it for funding and my costs 8000% more the other patients.
Any help would be appreciated.
Sophie