Francesca with Nicki at home
When Francesca was less than a year old, doctors discovered a cancerous tumour in her cheek.
The tumour is wrapped around the optic nerve and main artery to the brain so cannot be completely removed. In addition to the cancer Francesca also suffers from a rare neurological condition that prevents her from being able to smile, eat properly or speak clearly.
Francesca's family were referred to Rainbow Trust mid-way through Francesca’s chemotherapy. They met Family Support Worker Nicki who immediately started supporting them when they needed her. Her mum, Liz says, “Nicki helps a lot with the hospital appointments. She drives us both there and also spends time with us when we are in hospital. Francesca is often not allowed to eat or drink when she is in hospital and as she needs someone with her at all times, that means I can’t eat or drink when I am around her as it’s not fair. Having Nicki there means I can pop off for half an hour and have a coffee or something to eat, knowing that someone Francesca knows and trusts is still there with her.
“Nicki is always there for us, taking the stress out of the day and entertaining Francesca whilst I talk to the various consultants. Even if we don’t have hospital visits, Nicki comes to see us each week to play, chat and keep us company. She also spends time with our older daughter Imogen when she is not at school Without Rainbow Trust and the support they have given to us, we would have never got through the past five years.”
Things have been hard for the family. Francesca couldn’t go to nursery because her treatment meant that she was unable to fight infection and even a common cold would be life threatening , Liz was therefore not able to go back to work. They had to sell their house as they could no longer afford the mortgage on one salary. Liz says, “We’re taking it in our stride. Cancer is not discriminatory, it can affect anyone. We worked hard to get where we were and although we’ve had to take a step back to where we started on the property ladder, it can be considerably worse for some families”.
Family Support Worker Nicki has been ever present through the past few years. Liz says, “It’s difficult to quantify that kind of help, it’s so very important. We really notice it when Nicki isn’t around.”
Last year Rainbow Trust provided 6,566 hours of hospital support, helping to organise appointments, explaining illnesses and treatment, looking after siblings, staying with sick children and supporting families in neonatal units.