I have posted here before. My 8 year old daughter has been diagnosed with DPG on March14/ 2005. Treatment: Radiation with Temodar Chemotherapie 42 days on low dosage. At the end of the 42 days the Tumor did not respond to either radiation nor chemo, we were sent home to spend quality time with our daughter. Docs did not want to continue maintenance dose of temodar, but I forced the issue and continued. We had a up and down summer but she returned to school in September/05. 2 MRI's during the summer showed no progress of the Tumor, swelling and the cyst of the tumor had disappeared. We were hoping, but 5 weeks later the ugly beast raised it's head. The latest MRI showed that the tumor doubled in size within the 5 weeks. Docs want to discontinue Temodar and switch to VP/16 instead because I will not accept the docs discontinuing all the treatment. I don't know how much time we have left, every day is precious. She has lost the use of her left arm and her left leg does not want to cooperate anymore and of course dizziness. Increase in decadron did not bring any change. I hear lots of you talk about ruta 6c and calcera etc. Which experiences did you make with complementary therapie, which ones did you find worked and which ones were a waste of time. My daughter takes Boswella Serrata, a natural anti inflammatory, I contribute the fact that we survived all summer on a very low dose (0.5mg 2x a day) of decadron to the boswella.
Our children do not deserve a life sentence like this.