First of all welcome to the group.
I think going to the conference will hopefully calm you down alittle bit. Getting it properly diagnosed is what you should be focuseing on. If it is going to grow it is not going to grow over night it will be a gradual.
If you do not think it is a hemagioma it could also be an AVM. Do some research on that and see if it sounds more like what she might have.
I hope this helps.