Prior to the past decade or so it has been virtually impossible to truly connect DIPG famililes as a community in any significant way. The internet has changed all that. Not only is there virtually instantaneous communication- but that communication can happen even if the languages are different!
It might not be easy to find these sites at first; however, if one translates brainstem glioma or pontine glioma (in a translator site such as google translator) some time new worlds open up. This is exactly what I did in French. Putting "Tumeur du Tronc Cérébral" in the search engine was immediately rewarded by finding another DIPG site from halfway around the world. Fortunately (for me) my commuter asked me immediately if I wanted to read in English.
Funny, smart, sensitive Eva inspired her parents to make this site. This little girl subsequent to developing a squint was diagnosed on June 5, 2010. After a 7 1/2 month battle she died on January 20,2010.
This site contains quite a bit of information- from understanding high and low grade brain stem tumors to different therapy options. As with many parents starting sites, there are items trying to make a difference. One such thing is a petition calling on more research for pediatric cancer research in France. Another is a survey of parents who have had children with DIPG.
Perhaps one of the most sought after items is a page about long term survivors.
Most of these children are atypical in some way. There are three points to that:
1) Prolonged survival does not mean a cure- just that so far these children have beaten the statistical odds. Most of these children's site that have information about the tumor show that it is still there.
2) Not all families that came into the DIPG world are dealing with typical DIPGs so these rare but hope-giving kids are particularly important to those dealing with atypical DIPG.
3) At least one child listed there is known to be typical by current standards- Dasia.
DIPG happens all around the world. The world wide web is making all the difference in our being able to communicate and understand what is going on internationally.
Note- to understand the difference between typical and atypical DIPGs
