诗酒兄,很难过听到你女儿的消息。愿神与你们一家同在,保守你们,看顾你们。
我丈夫是我们这里儿童医院的病理主任,我问过了他,他也说这是非常不好的肿瘤,基本情况和你所听到查到的都差不多。他说"Johns Hopkins Children's Center" 和“Duke Children's Hospital and Health Center"是这方面最好的医院。 Henry S. Friedman.MD from Duke is very well recognized.
Let me know if I can be of any help. My email is k9p.k9p@gmail.com