Remembering Ruby: Parents say resource is needed to prevent more terrible loss
More than 80% of children survive cancer but the legacy of treatment can have devastating effects on their quality of life and age expectation.
The loss of those who do not survive inflicts the saddest, cruellest grief for parents, according to hospital pharmacy manager Claire Stewart.
She and husband Andy lost their daughter, Ruby, to a soft tissue tumour which first appeared as a lump on her ankle when she was only four.
Diagnosed in September 2017, the cancer was metastatic alveolar rhabdomyosarcoma.
Despite arduous treatment, Ruby did not reach her seventh birthday.
The number of patients suffering this type of cancer has increased since 2010.
In tribute to their daughter, who remained relentlessly upbeat despite her illness, her parents founded the Be More Ruby charity to raise awareness of childhood cancers and to drive for research into treatment.
“Ruby was diagnosed at stage 4 and, while her aggressive cancer may not have been successfully cured, I know of other parents whose children’s cancers have not been detected earlier and that can make a considerable difference to survival and severity of treatment,” said Claire, from Perthshire.
“GPS are the first port of call for parents worried about symptoms in their children and so we must ensure an adequate level of teaching of childhood cancers is given both at undergraduate and postgraduate GP training.
“While child cancer is rare, it is devastating to every child and its family and merits no less attention than other diseases of childhood.
“What is woefully inadequate are the resources devoted to the research and treatment of paediatric cancers, compared with those in adults.
“Survival of other cancers more common in adults has risen significantly.”
She points to astronaut Neil Armstrong’s daughter Karen Anne, who died from a childhood brain tumour called a DIPG which is still incurable 52 years later. She asks why, decades after putting a man on the moon, survival after diagnosis is still less than a year.
“Those lost years of life for our children need addressing urgently.”