Quote Originally Posted by Mr. Silver View Post
Brandi, sorry to be a little long here and on a soapbox...

A point that we've emphasized before is that I'd encourage your sister to push hard with their insurer to get your niece to the best regional or national center with experience treating the disease (if there is one).

As my old friend the pathologist says: "the last thing you want in life is to be an interesting case to a pathologist...".

Likewise, the last thing you need is to have a rare disease treated by someone that has never treated it before as well...the fact that they even allowed your sis to walk away thinking of it as a "rare cancer" perplexes me after looking at the LCH site...

Maybe this is rare enough that it's someplace like St. Jude. As former Memphians, I can tell you that St. Jude is OUTSTANDING. While not cancer, I only say this because oncologists treat this thing ...and Memphis has more oncologists per capita than anyone else, a great Ronald McDonald house, and a network of churches that provide support to the families of kids at St. Jude.

I hope that your sister can get past her apparent tendency toward inconsolable grief and get plugged in to a support group of some sort, become very well informed on the disease, and hold the medical professionals accountable through her acquired knowledge (and this may help her get past the grieving stage???)

As we've shared before, when my Mom nearly died of malnutrition, it was Silver making the decision to take her to Barnes Jewish Hospital in St. Louis that got her celiac disease diagnosed...and saved her life. Barnes had the correct diagnosis within 10 minutes after 10 months of mistreatment elsewhere. Now, Silver knows more than the local docs...and keeps them on track. The reality is that doctors cannot know everything about everything...and direct experience matters.
My Mom who has never been that much of a Mom has actually mentioned that hospital and she lives not that far from it as well. And my brother and he's family are not that far from it either. My sister would preferr to stay with my brother though. My mom is some what of a slob and a smoker. I don't think my sister wants to be around that. It is funny we are all clean freaks because of her.
I am going to cute and paste your message on a email to my sister. I am a little afraid to give her to much info right now. I think she might be overwhelmed. She finally answered and instant message last night but it was brief.