DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Saturday, March 2, 2013

Understanding the Journey, A Parent's Guide to DIPG

Here is a excellent resource for anyone who really wants to understand the issues surrounding DIPG kids- from day to day treatment to current research.   Each chapter is written by leading pediatric brain tumor experts such as Mark Souweidane, Michelle Monje, Ken Cohen, Mark Kieran, George Jallo and many others.  The chapters are followed by dozens of personal stories from parents who have walked this path.
The book was developed by the American Childhood Cancer Organization (formerly known as Candlelighter's Childhood Cancer Foundation).   The book is available free to families who join ACCO-
(page down to the 4th book which has a child walking down a road on the cover).  

This is a worthwhile addition for anyone dealing with DIPG.  

Thanks ACCO! 

Book Description from ACCO site-
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.

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