Support Kylie in her fight with rare cancer

This fundraising page is seeking support and assistance in association with my diagnosis of a rare and aggressive Cancer called Leiomyosarcoma (Leio = smooth, Myo = muscle, Sarcoma = malignant tumour occurring within the soft tissue of the body). I am a Carer and live with my husband and our youngest children, aged 10 and 11 years of age.

Sarcoma's account for less than 1% of all adult cancers and are typically painless, going undetected until such time as they have grown to a size where they are encroaching on other bodily parts and/or are advanced. Their rare and aggressive nature are such that treatment is recommended with a Sarcoma Specialist. Living in regional New South Wales, the nearest Sarcoma Specialist is located six hours drive south in Sydney, New South Wales.

In March 2022 I discovered a small golf-ball sized lump in the back of my right thigh. A battery of tests including ultrasound, MRI, X-Ray, PET-Scan and biopsies were performed and on 11 April 2022, Leiomyosarcoma was confirmed.

A course of neo-adjuvant Chemotherapy and Radiation treatment was commenced in May 2022, in an attempt to reduce the size of the tumour prior to surgical resection. In June 2022, surgery was performed at Prince Of Wales Hospital in Randwick to remove a tumour measuring 90 x 71 x 70mm in size, along with a 10cm area surrounding the tumour that was also involved. A second surgery was required to obtain clear margins. An estimated 60-70% of my hamstring was removed.

Post-surgery complications of infection, seroma, and wound dehiscence as well as radiation damage left me a chronic, exudating sinus cavity requiring wound VAC therapy and was followed by wound packing and dressing for more than nine months until April 2023.

In February, re-staging scans identified a potential local recurrence located further up within my remaining hamstring. Subsequent scans and biopsies confirmed recurrent Leiomyosarcoma in March 2022. My treatment this time included surgical resection of the recurrent tumour, followed by a second surgery by a Plastic Surgeon for reconstruction of my hamstring to repair the chronic, exudating sinus cavity caused by the original surgery.

On 24 April 2023, I was admitted once again to Prince Of Wales Hospital for surgical resection of the recurrent Leiomyosarcoma. Upon confirmation of clear margins, on 1 May 2023 a second surgery was performed to reconstruct my hamstring. After suffering with fevers associated with infection, a third surgery was performed on 10 May 2022 to re-open the rear incision to debride and clean the wound. It is now estimated that I have between 20-30% of my hamstring left.

Following the last surgery, I was then referred to the Hyperbaric Medicine Unit for Hyperbaric Oxygen Therapy with the hope of assisting with wound healing for Chemotherapy and/or Radiation treatment. All in all we spent eight weeks in total, (four and a half weeks as an inpatient and a further three and a half weeks as an outpatient) in Sydney receiving treatment.

I am now home and am waiting for the last of my superficial wounds to heal before commencing treatment. As the main income earner of my household, I am unable to work for the foreseeable future and we are reliant on Centrelink benefits.

Although I am able to undergo Chemotherapy and Radiation Treatment locally, there are many other out-of-pocket costs associated with my treatment over the last couple of months and also my ongoing treatment in particular with travel to and from Sydney regular basis for follow-up care and treatment, accommodation, costs in association with multiple specialist consultations and diagnostic testing and imaging, and physiotherapy to name just a few things.

I started this Fundraising Page in April 2023 prior to my admission to Prince Of Wales Hospital, I have updated the description to include recent events over the last couple of months. I hope that the information I have given is clear and concise and that my family and I can count on you for your compassion and support.