Jake Swinscoe

In July 2023, Jake was a normal, happy, healthy 13-year-old boy who had started complaining about having a stuffy nose and watery eyes. Assuming he had hay fever I gave him an antihistamine every morning and that relieved his symptoms. At the end of July, a swelling appeared across the bridge of Jake’s nose and his dad made an appointment with the GP. The GP was concerned and sent them to Salisbury A&E for further investigation. Jake was seen almost immediately and was taken for a CT scan and admitted to the children’s ward for observations. The next day we were told that he had a 6cm by 4cm mass behind his nose which had caused fractures in his orbital bones and that they would be sending us by ambulance to the Piam Brown Ward in Southampton Hospital – The Children’s Oncology Ward. We were shocked and upset but Jake was still just his usual self, he didn’t have any other symptoms and up until that point he had still been taking part in all his hobbies, kayaking, and sailing with the sea cadets.

On arrival Jake had an MRI scan and we were told by his consultant that she suspected he had Rhabdomyosarcoma and a biopsy was taken. We were told that during the small space of time between the CT scan and the MRI, that the tumour had grown and so they were going to start chemotherapy immediately, even though we didn’t have a full diagnosis, they didn’t want to wait in case the tumour grew further and affected his eyesight.

2 weeks later we had Jake’s full diagnosis, Stage 3 Fusion Positive Alveolar Rhabdomyosarcoma, we were devastated to find that cancer had also spread into his lymph nodes. His prognosis was poor, with around 20% chance of surviving the next 5 years. It was explained to us that Jake would now have to have 9 rounds of IVADO chemotherapy and that he would also have to go to London for Proton Beam Therapy. Over the next 7 months Jake completed his 9 cycles of intensive chemotherapy, with several hospital admissions due to the side effects. He suffered with nausea, had 4 blood transfusions, 1 platelet transfusion, he endured aches and pains, blood tests, scans, painful GCSF injections, and admissions due to infection. He had surgery for fertility preservation, and a PICC line fitted, which was later swapped for a Hickman Line. Before moving to London for 8 weeks for Proton Beam Therapy he had a PEG fitted, in case it affected his ability to eat, luckily he didn’t need to use it other than cleaning it every day. Jake did all this with a smile on his face and a sheer determination to just get on with it, because he wanted to be the lucky one that got better.

In March 2024, Jake had a routine MRI scan at the end of his initial treatment. Jake had been feeling unwell and had been sick since chemo had ended and his hands had developed a tremble. The MRI scan showed that although his lymph nodes were clear and his original tumour was no longer active, cancer had now spread into his Cerebrospinal Fluid, which is the fluid surrounding the brain and spinal cord. A lumber puncture confirmed the severity of this. Jake was admitted to hospital a few days later to receive relapse chemotherapy, but unfortunately during the night he suffered a series of seizures and was admitted to the Paediatric Intensive Care Unit where he was given a huge dose of steroids to control the swelling on his brain. It was extremely scary and Jake was not responding to any treatment. The team called for his dad and sister Ava to come to hospital immediately. We made the decision to move him to hospice, but Jake woke up before we got him there and wanted to know why we were all crying. He couldn’t remember the seizures and asked for a Crunchie and a can of Fanta! His consultant asked if he wanted to continue with treatment and Jake declined. He said if he only had a little bit of time left then he didn’t want to feel poorly from chemotherapy. We were incredibly proud of him.

Jake came home and we let him do whatever he wanted and eat what he wanted. This meant that he was able to have his favourite sushi and smoked salmon with cream cheese, which made him so happy as he hadn’t been allowed these foods during treatment. He got to ride in a Lotus super car, he watched his sister catch a fish and he received gifts and video messages from his favourite celebrities. Family came to visit and we had meals out, we visited his friends and we laughed a lot. In his last days we had the care of Jake’s amazing community team from Salisbury District Hospital and Julia’s House Hospice. Jake passed away peacefully at home on Friday 26th April 2024, just 2 weeks before his 14th birthday.

Jake lived life to the full during his short life, he loved sports and was extremely popular amongst his friends. He was a typical teenager, cheeky, funny, handsome, and charming. The bond he had with his sister was incredible. He was independent, intelligent, and strong. His loss has left a huge void in our lives, Jake did not deserve to have his life cut short in such a cruel way.