Owen McAfee, who is just 18, was diagnosed with Stage 4 Synovial Sarcoma in July 2022, at the age of 17.
Owen had been having problems with his right hip for about 18 months – a reduced range of motion and weakness – which prompted his family to seek some medical help.
His mum, Glenda, said the issue was initially diagnosed, during the Covid pandemic, as hypermobility of the hip following a phone consultation with a doctor.
Glenda explained: “We began a private physiotherapy program to try and regain the strength in his hip. Over those next 18 months and some more clear X-rays and physiotherapy, there was no improvement in Owen’s symptoms. In June 2022, we made a private referral to see an orthopaedic surgeon who arranged an urgent MRI scan for Owen.
“We were not prepared for what he told us a few days later, that the large mass in his hip and thigh was likely to be a lymphoma or sarcoma. I don’t think any of us remember that car journey home, we were sick and numb and terrified. Owen was red-flagged through the NHS system, and three days later he was having a full body CT and having biopsies done.”
On July 18, 2022, Owen attended the appointment hoping for good news; praying for a benign growth but those hopes were soon dashed.
“Nothing prepared us for the news that Owen had Stage 4 Synovial Sarcoma, which had already spread to his lungs. No words can ever describe that moment,” said Glenda.
“The next few days are a blur, as we struggled to deal with our fears and anxieties, and to prepare to bring Owen to the Cancer Centre to begin his treatment on July 25, 2022.
“Owen underwent six cycles of chemotherapy with two drugs, one of which is nick-named ‘the red devil’, for obvious reasons. This was a harsh and difficult treatment for Owen, he was an inpatient for 4/5 days every three weeks. Owen faced all of this head on, taking one day at a time and never complaining.
“He was so brave dealing with all the side-effects which were taking a toll on his body and his happy-go-lucky spirit. He is a true warrior and we were so proud to see him ring the ‘end of treatment’ bell in November 2022.
“Owen’s post-treatment scan results on January 5, 2023 told us the news we wanted to hear, that his lung nodules had responded really well to the treatment and he had no evidence of new disease. We celebrated this news nervously, glad to take ‘the win’, but we also knew that there was also a high chance of recurrence of the disease.
“Owen then had radiotherapy on his hip and thigh during February 2023, and we are pleased to say that this tumour continues to remain stable.”
Unfortunately, routine scans at the beginning of June, and again in August, show a recurrence of disease in his lungs, however, the 18-year-old is showing no symptoms of the disease at the moment.
Said Glenda: “As we are in a fork in the road in his treatment plan, his Oncology team have told us its the best time for us to explore other treatment options which are not available on the NHS.
“As you can imagine, it’s hard to ‘watch and wait’, knowing the cancer continues to grow. There are very few Clinical Trials for Owens sarcoma sub-type, and we were very disappointed to recently be told that he was unsuitable for a drug immunotherapy trial in the UK.
“This drove us on to find another suitable alternative treatment for Owen, that will give him the best chance, and allow him to do all the things his friends are doing. This research lead us to find a cell-immunotherapy called PTAC (pre-prepared anti-cancer vaccines), through a European clinic based in Dublin called Innovita Life.”
As well as this treatment, the family also want to have a Drug Sensitivity Test carried out on Owen’s tumour.
This test is called the Exacta Test, and it is carried out by Datar Cancer Genetics in England.
Glenda added: “This test will give us a more targeted approach for future chemotherapies for Owen, as it will tell us which chemotherapy agents will work specifically against Owen’s tumour.
“Unfortunately none of these treatments, or tests, are funded by the NHS, and as you can imagine they are very expensive. We know it is a huge ask, but if you are able to help in any way at all, we would be very grateful, as it will give Owen a chance of living years with hope and happiness.”
To donate, visit Owen’s GoFundMe Page here.