Our beautiful son, Tom, died on November 8th 2010 aged only 9 and just seven short months after being diagnosed with a malignant medulloblastoma brain tumour. In his memory we have set up "Tom's Trust".
Brain tumours are the most common cause of cancer deaths in children under 15.
All childhood cancers are of course devastating. Brain tumours are particularly complicated, due to the site of the tumour and the fact that the treatment required is very aggressive. Most children undergo an initial long and complicated surgery in an attempt to remove the tumour. They then undergo multiple cycles of chemotherapy followed by radiotherapy to the brain, which can permanently damage healthy brain tissue causing long term problems for the child. Rehabilitation for these children during and after treatment is therefore a particularly long and difficult journey.
A clinical psychologist is uniquely qualified to undertake neuropsychological assessments on these children to help to plan for their future educational needs and help the families understand any cognitive difficulties that may have resulted from the tumour, surgery and/or radiotherapy. The psychologist performs a crucial role for the parents and siblings of these children throughout treatment and if, sadly like Tom, the child loses their fight against this horrible disease, should ideally be available to provide the bereaved family with support for up to a year after their child's death to help them deal with their terrible loss.
What we aim to do
Psychological support is an essential, yet under funded and undervalued part of the rehabilitation process that these children must go through. Starting at Addenbrookes Hospital Cambridge, where Tom was treated, the aim of Tom's Trust is to ensure that a clinical psychologist is available for children with brain tumours and their families from the point of diagnosis, supporting them throughout treatment - and hopefully later after treatment - as the children slowly return to their schools and lives.
Addenbrookes propose to create a complete rehabilitation team dedicated solely to children with brain tumours. They have asked Tom's Trust to provide the funding for clinical psychology within this team. Our long term aim, once this team is successfully put in place, is to provide psychological support within a similar dedicated rehabilitation team for all UK hospitals that treat children with brain tumours.
Andrew & Debs Whiteley