"Survivorship", however, presents a new set of problems for these children and their families. In the past, these children were not expected to live more than a few years and their future special needs were not considered.
All of these children will need to be followed closely by medical professionals and the social, psychological, educational and physical needs will be unique for each child. Often, because of various brain tumor treatments, these children will process information in a different manner and each child may require special tools or programs in order to learn and develop to their maximum capabilities.
Some treatments may have altered them physically and they may be more vulnerable to infections and other illnesses. As a result of radiation therapy, these children may have permanent hair loss or thin areas which may make them feel that they are different from other children and affect their self-image.
As these children grow, there may be certain developmental issues that will need to be addressed. Surgery and / or radiation therapy may interfere with normal pituitary function. Issues that parents may want to discuss with professionals, should they arise, are: short stature, obesity, alterations in puberty, sexuality and future child-bearing.
Another issue, although it may not show on the outside, is that these children have faced a life-threatening illness. Years before they should, they have become sophisticated in the world of lumbar punctures, craniotomies, chemotherapy and radiation. General psychological counselling could be considered to help them deal with their view of the world and their future.
Since survivorship in these children is a relatively new consideration, parents may find that appropriate counselling and support programs may not be readily accessible. As an advocate for your child, you may need to seek out professional and community services which will lead your child down the path towards adulthood.
The future is bright for children who are surviving brain tumors.
Love your child.
Support your child, and, if necessary,
Advocate for your child.