Help Owen beat Sarcoma.

Hi, my name is Glenda and I am mum to 18 year old Owen, living in Armagh. Owen is an amazing son, brother, grandson, nephew, cousin and friend to the most incredible support network of family and friends. Owen is a huge sports fan, in particular, his beloved GAA teams, of his club, Armagh Harps, and Armagh Senior County Team as well as Manchester United and UFC.

Owen was diagnosed with a rare form of cancer in July 2022 at the age of 17, and we are now asking for financial support to help us cover the costs of cell immunotherapy and advanced diagnostic tests, which are not available on the NHS.

Owen's story:

Owen had been having problems with his right hip for about 18 months - reduced range of motion and weakness, but no pain to really speak of and no swellings or lumps. During Covid, this was diagnosed over the phone as hypermobility of his hip joint and 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 3 days later he was having a full body CT and biopsies taken.

On the 18th of July 2022, we went to that appointment with hope in our hearts that they were wrong and this was just a benign growth. 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.

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 25th of July 2022. Owen underwent 6 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 3 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.

Owens post-treatment scan results on 5th January 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.

Sadly at the start of June, and again in August, the routine scans show that Owen has a recurrence of disease in his lungs, and as he is thankfully still symptom free, his oncology team are happy to support Owen with the 'watch and wait' approach (as is the case with many sarcomas), before starting treatment. 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, its 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. This cell-immunotherapy does not use drugs or have any side -effects, and Owen will be able to have this treatment in his own home, as the Innovita Life nurses will travel up from Dublin to give him his treatment.

This cell immunotherapy will stimulate Owens immune system with several know sarcoma antigens, which will in turn cause Owens immune system to produce new immune dendritic cells, which will fight against his sarcoma. Owen will also receive infusions of Cord Blood Natural Killer cells, and these play a crucial role in anti-cancer immunity. To supplement all of this, Owen will also receive infusions of Curcumin - this is the anti-cancer component of Turmeric. All of these treatments can be continued alongside standard chemotherapy if that is required, and Owens Oncology team are happy to work with us to complete this immunotherapy. Studies have shown that following immunotherapy, patients achieve an increased response to any further chemotherapy, and a reduction in its side-effects.

As well as this treatment, we also want to have a Drug Sensitivity Test carried out on Owens tumour. This test is called the Exacta Test, and it is carried out by Datar Cancer Genetics in England. 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 Owens tumour. This test will be looking at the DNA and RNA of Owens tumour and challenging it to grow or be killed in the presence of the drugs. This will save vital time in Owens treatment - instead of trying a chemotherapy for a few months only to find after a scan that it hasn't worked, this test will tell us which chemotherapy will work for Owens tumour from the outset.

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.

Thank you for taking the time to read all of this.

Glenda x