Any Advice on Obstructive Hydrocephalus Pontine Glioma

[TWS_Worried]

Does anyone have any experiance with a brain stem tumor (obstructive hydrocephalus pontine glioma), in a four year old. Treatments, Quality Of Life and/or Success Stories.

[TWS_Worried]

Thank you for your reply. Our 4 year old grandson, was just released from the Children's Medical Center in Dallas, at is at home resting and waiting, to start 6 weeks of radiation, on the 17th August. He has been diagnosed with DIPG (diffuse intrinsic pontine glioma) and the prognosis is not good. We have contacted many of the treatment and testing centers looking for new case information. I have hundreds of emails out and have read every web page on the internet forward and backwards. We now wait, pray and work on giving him the best that life can offer. I have set up a donations/savings account and I have encouraged everyone that knows him to keep a daily journal. We are keeping the faith and today we will attained church as a family and ask for their help and prays.

[rumpled]

Do you have other information, such as the size or the lesion, the health otherwise...

I would read up, try to find a doctor experienced in the treatment, and get your kids to that doctor. Kids tend to be more resilient and if they are otherwise healthy, tend to heal well. Get copies of everything. There is a doctor forum here as well.