Charlie's Story

In May 2023 Charlie had been playing in a rugby tournament with his team for end of season tour just before Charlie’s 14th birthday.

He said his back was aching, we thought muscular from rugby. Then in the first week of June 2023 after a few visits to the Drs and our second visit to A&E due to Charlie being is a huge amount of pain a Dr decided that something wasn’t right.

Charlie had a scan which showed damage to his vertebrae. Our world was turned upside down , within a few hours we were in an ambulance on our way to Queens Nottingham from our local hospital in Northampton. Charlie was found to be in kidney failure.

After a biopsy we had a two week wait to get the formal diagnosis of metastatic Alveolar Rhabdomyosarcoma a very rare aggressive soft tissue sarcoma which affects about 100 children in the UK a year.

Charlie also had no identifiable primary making his case extremely rare. Scans showed he had it in most of his bones. He also contracted pneumonia whilst in hospital.

We stayed in Nottingham for about 6 weeks or so then moved back to Northampton to be close to home where our local hospital have been fantastic. They managed to get Charlie from being bedridden to being off the ward for an hour or so within a week . Then we got to spend more and more time at home. Charlie completed 9 cycles of Front line chemo then went onto maintenance . He had a PET scan 4 months into maintenance chemo which showed some “ new hot spots , compared to end of frontline PET scan that only showed two hot spots in his vertebrae,
(Which they thought it could have been bone healing. )“

Charlie has now completed his 10 th cycle of VIT chemotherapy and all in all is doing pretty well.

He watches Northampton Saints rugby team every home game and his U16 every Sunday. Goes to school for a few hours as and when he feels up to it .
Loves his X box and football along with star gazing, so keeps himself busy.

Thank you to Bens foundation for this break.