I was wondering how your little boy is doing.
We have a 7 yr old daughter that was diagnosed on 8/29/06 with DIPG. We caught it immediately due to the fact that she had a headache and I knew if she had a headache something was wrong. They did a CT and sent us to Cardinal Glennon Children's Hospital and confirmed it on an MRI. She really has had good neuro exams still. She did just finish 6 weeks of radiation and is currently taking Temodar.
We are looking for someone doing a clinical trial involving immunotherapy. We heard of someone in Japan doing this but now heard there will be a pediatric trial at Cedars-Sinai from our doctor at Cardinal Glennon Childrens Hospital in St. Louis.
We are also looking into a new trial involving Reovirus developed by Dr. Lee in Canada. Those two look to be the most promising out there. Currently they are not doing a trial for children.
I noticed your son has survived for over a year and If you wouldn't mind, I was wondering if you would tell me everything you have done for him during the past year. Is he currently taking anything or involved in any trials? Have you used any unconventional therapies? We have also just come accross the use of Mistletoe (Iscodar). Have you heard of it?
I am so sorry for burdening you with all of these questions. I hope your son is doing well.
I hope to hear from you when you get the chance.
Thank you so much.
Gina W.