Hi Eileen:
First of all I would like to tell you how sorry I am to hear about your daughter. I just lost my daughter due to a nine month battle with a diffuse pontine glioma. This is the worst thing I have ever witnessed. Value every single minute you have with your daughter. While she is still able to get around get in touch with the Make A Wish Foundation and help grant her wish while she is able to enjoy it. There is very little information about DPG at this time. If I had to do everything all over again, I would have never put my daughter through radiation, chemo or the steroid medication. It only prolonged her life and allowed this tumor to take everything precious to her away bit by bit. At the end she was blind, deaf, on a feeding tube, unable to walk, or move her arms, in diapers and could not speak. Finally, she could not breath. This will be very difficult to watch, but rely on friends and family to get you through this. Most of all if you are working, take off the time so that you can be with your daughter. I will pray for you and your family to get through this.
Lots of Love,
Teresa