Boston Children’s Hospital
I just got off the phone with a coordinator for the Vascular Anamolies Center at Boston Children’s Hospital. Many of you have pointed me to an article on Boston Children’s Hospital web site which specifically addresses EHE. So, I finally sat down and called them. I spoke with a coordinator in the Vascular Anamolies Center and explained what was going on.
My big concern is that Ana will get chemo that won’t actually help shrink the tumor and will make her sicker, and Boston Children’s seems to have a protocol for EHE which involves chemo, but a much milder drug that doesn’t cause all the typical side effects.
So…my new job is to get all of Ana’s test results sent the Boston team of 17 specialists so they can review everything. We don’t have the biopsy results yet so that will delay things, but I’m hopeful because this woman said that several children have presented with this over the last few years and they definitely have experience dealing with it. I just hope the team at Westchester is willing to work with the team in Boston to give Ana the right treatment. I don’t want to have to relocate to Boston with our entire support system located near Westchester.