Diane,
Thank you so much for your help! I will definitely consider Children's Hosp. I'm amazed that they have Desmoid tumor on their site considering how rare it is. Right now, I'm just trying to figure out what kind of doc can help us. We've been to the oncologists and they stopped the tumor from growing, which is 90% of the battle. Now we just need to figure out how to open his mouth.

I'm thinking that the maxillofacial surgeons may have the most expertise, since there must be an obstruction that is preventing the jaw joint from opening, even when forced. I was hoping someone from this site would know of a doc who has experience in this field, or with cancer patients with lock jaw.

Thank you for your help! I did see a pedi-maxillofacial doc on that site who I will contact. Good luck to you as you battle with your cancer. I hope and pray that it does not come back.

Thanks again,
Debby