KHE with Kasabach-Merit

Hi. My 7 week old son finally had a biopsy last week and they firmly diagnosed this as a Kaposiform Hemangioendiothelioma (KHE). THis type of AVM consumes platelets and he is requiring several transfusions each week (sometimes daily). He is still in the NICU at Yale. I'm wondering if others have had this diagnosis and what treatments they received, etc. Thanks.