Hi, my daughter Ashton is 18 and has had this monster since July in her right foot/ankle. We somehow have been lucky to keep it contained there. Scared to death it will move though. I feel like it is controlled to some degree because her environment is so controlled. We have also been lucky to have it dx early and have had pretty aggressive treatments to manage getting her mobility back. If you ever just want to talk parent to parent I would be happy to, you can PM me. It is really hard for the child/teen and for the parent and family to deal with this beast and all that comes with it.

Good luck to you.
Andrea in TX