Understanding the Journey, a Parent's guide to DIPG
This is a 368 page comprehensive resource that guides the family whose child has been diagnosed with a diffuse intrinsic pontine glioma through this difficult diagnosis. Chapters are written by pediatric neuro-oncology experts and cover all aspects of treating a child with a DIPG including: diagnosis, imaging, pontine function and anatomy, steroid treatment, radiation therapy, radiosensitizers, surgery, chemotherapy and biologics. Helpful chapters on loss of communication and caring for the child at home provide practical advice. Research chapters focused on animal models of DIPG, stem cell research, vaccine research, convection enhanced delivery and genomic research provide hope for a brighter future. The final chapters on organ and tissue donation as well as integrating palliative care answer the questions that families ask at their child's end of life. The book includes 164 parent stories that provide personal insight to the DIPG journey.