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| Author | Topic: DPG |
| Cheryl |
posted 10/4/07 1:43 AM
Is this forum still open ?My grandson is 9 1/2 yrs old and was just diagnosed this past July 23 , 2007 with Diffuse Pontine Gliomas.He has a caringbridge site, I will put the link below.What I want to know are there any survivors ? any that have reached adult hood ?I wake up with my precious grandson on my mind and go to sleep with him on my mind. http://www.caringbridge.org/visit/dae_hon_gonzales Dae Hons CaringBridge SIte |
| Dean Steadman |
posted 10/13/07 5:01 AM
Hi Cheryl, Thanks for posting the link to Dae Hon's site. It breaks my heart to meet another child with DPG. He has a wonderful smile and we're praying for him. The short answer to your question is that there aren't any long term survivors and that the average survival time is 9 months from diagnosis. The treatment for DPG has progressed a little over the last few years and I'm not excited about any of the current clinic trials available. It can be difficult finding information online due to the health reporting restrictions and details provided in many of the trial reports. I've found the best information on the sites of other parents and am happy to pass along anything that might help your family. Please let me know if you'd like more. http://steadman.blog.com |
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