Hayley and Gary are celebrating after bringing their baby son home from hospital following trial treatment that shrunk a large tumour on his arm, and are thanking the hospital and the charity that has supported them.
They brought four-month-old baby Cameron home on 6th August 2021 after he was born with a large tumour on his arm that was larger than his head.
Cameron was born on 28 April and since then Hayley and Gary have faced an immensely challenging time, splitting their time between Cameron’s bedside in the hospital and looking after their four-year-old son Fraser.
Throughout it all they have been supported by Rainbow Trust. The family initially heard about us from a friend before Cameron was born and chose to refer themselves. They started being supported by Family Support Worker Shelly, from the North East Care team.
“Shelly is brilliant. It’s been a really tough few months for us juggling trips to the hospital and looking after Fraser. We have to rely on public transport to get around but Shelly was able to drive us to the hospital, which saved so much time rather than a stressful journey on the bus which could take up to two hours.
“Shelly also understood what we were going through, and she would look after Fraser for a few hours while we were in the hospital. She gave Fraser lots of attention and let him have some fun and attention while we needed to be with Cameron.”
Cameron’s tumour, which is not cancerous, was given a new treatment that Newcastle Hospital was trialling, called entrectinib. Cameron was the only patient in the hospital receiving the treatment, which uses gene therapy to target certain proteins in the tumour that cause cells to grow. Thankfully positive results were seen immediately.
“Cameron had been on chemotherapy initially, but we weren’t seeing any real change, but the new treatment was amazing. Within a couple of days we could see the tumour shrinking.
“We have been desperate to bring Cameron home and finally be together as a family at home. The treatment was so successful we made it home a week earlier than planned. It’s early days and he might still need an operation when he turns one but for now things are looking really positive.
“We are so grateful to the hospital for everything it has done for Cameron and to Rainbow Trust who have supported every step of the way and continue to help us now that we are home.”