At 17-years-old, our son Ollie was working towards his dreams; to complete his plumbing apprenticeship; get the coolest of cars and work towards buying a house!
Ollie and his mum at a family wedding one month before diagnosis
A nagging shoulder pain saw us go to several GP’s for advice and treatment and to physiotherapy. The doctors we saw suggested it was likely to be a strain for manual labour, and physio and paracetamol should resolve it. However, the pain persisted and worsened. We sought a third opinion at another local GP, he immediately did a neuro assessment with Ollie, asked lots of questions and listened to Ollie. He strongly suggested the next step was an MRI. So thinking we were going for a short appointment to have a 45 minute MRI we ended up in the local emergency department, and on April 29, 2022, Ollie's normal teenage life was turned upside down with a diagnosis of a rare cancer - Synovial Sarcoma.
Ollie and his girlfriend Meg in August 2022
This saw Ollie put his dreams on hold, and all his drive, determination, amazing human spirit and humour into undergoing six rounds of chemotherapy and seven weeks of daily radiation at the Royal Children’s Hospital. Sadly this aggressive treatment plan hasn’t resulted in the outcome Ollie wanted, the cancer has persisted and spread to his spinal cord. In May this year Ollie had a tumour debulking surgery in Melbourne to relieve some pressure of his spinal cord, and to buy some time to seek treatment outside of Australia as we had been informed there are no further avenues of treatment in Australia.
Ollie’s oncologist found a trial which was targeting his specific diagnosis of Advanced Synovial Sarcoma with a hospital taking international participants in Washington DC. “The trial treatment medical title is: ADP-0044-002 phase 2 single arm open-label clinical trial of ADP-A2M4 SPEAR T cells in subjects with advanced synovial sarcoma”. The trial is having promising response rates targeting this type of cancer. Without this treatment Ollie's prognosis is incurable.
After many late night “Teams meetings” with the US team – and Ollie meeting the criteria to participate on the trial we took off to the US to begin his treatment journey on July 3, 2023 – one day after his 19th birthday.
We were to be in the US for 10 days for final testing followed by the process of Aphresis – the collection of Oliver’s T cells, return home to Australia, and then one month later return to Washington for the CAR T cell treatment. However, as this cancer has shown us there is never a straight line on this journey.
Ollie Carolyn in Washington for surgery & treatment
After reviewing the imaging the US team informed us that based on the size and locations of Ollie’s tumour the treatment could cause significant compression to his spinal cord – so the decision was made for Oliver to undergo Neurosurgery and Thoracic surgery to debulk the spinal tumour and attempt to remove the shoulder tumour to allow him to be considered on the trial treatment. This means we are now here for an extended stay of around three months.
Ollie in Washington for surgery & treatment
Ollie has now had the two massive operations, and after spending 15 days in hospital with a good chunk in ICU he is now out of hospital recovering for the next phase of the journey – which will be a series of base tests and imaging, followed by chemotherapy and the CAR T cell infusion. We are now likely to be here until mid October at this stage.
We are so grateful for the care Ollie has received, and the support our family and friends have given.
This next step in Ollie’s cancer journey will be challenging, on many fronts and during these times we all look for ways to provide support. This can come through your love, care and on this occasion assist in funding some costs that will come with the USA extended stay to support his recovery and the upcoming treatment and carer costs of living overseas.
If you in are in a position to funding support for Ollie’s next part of his cancer journey, it will be overwhelmingly appreciated by the family.
Thankyou for taking the time to you read our Ollie’s story. We need to share these stories so that we can draw attention to the research going on overseas, and bring it to Australia. We don’t want families just like ours being separated while going through the most difficult times of their life, and that young people like Ollie who are already enduring beyond their capacity aren’t taken out of their safe place to seek treatment.
Thankyou