My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

I'm sorry to hear about your son.  I know first hand how hard this is.  Statistic show younger people stand a better chance of beating brain cancer.  Our family is dealing with gbm and it is a though journey to be on. 

My niece has been diagnosed with a DIPG one month ago. She's under radiotherapy.

You've talked about some children who were cured. Do you know one of them ? Can you tell me what kind of treatment they had ?

I hope all your children are doing well.

All my support to your families.

Pauna

My niece has been diagnosed with a DIPG one month ago. She's under radiotherapy.

You've talked about some children who were cured. Do you know one of them ? Can you tell me what kind of treatment they had ?

I hope all your children are doing well.

All my support to your families.

Pauna

We lost Nick in august of 2011. I havent been on this site in all that time so I never saw your post until now. I just saw on The Cure Starts Now website (which specifically focuses funding on DIPG) that there is a new trial that has been approved for dipg that looks promising.  It doesn't use the old ineffective chemo & radiation.  The arsenic study that we took part in did seem to give us more time with Nick than other treatments seem to do.  He lived for 13 months after diagnosis.  I believe that the Budwig diet & the trial combined gave us a little more time with him.  I pray that this new trial gives new hope to families with this awful diagnosis.I pray your fiancee is doing well.