update on my niece.

[Mr. Bloom]

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.

[Triskeliongirl]

First of all, {lots of hugs}.

While of course we are all saddened by this news, as you said, knowledge is power, and is what is needed for her to get the treatment she needs to get through this. And at least it is curable, so the news could have been a lot worse.

Just to reiterate Mr. Silver's point about being sure to get her the best possible medical care, even if it means going out of her local area. That will give her the best shot at a positive outcome.

Please know we are here whenever you need support.

[Brandi]

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.

[snapdragen]

Brandi - wasn't the baby being treated at Children's Hospital of Orange County? I was on their website - it looks like a pretty good place.

Best wishes and blessings to your family, especially Baby.

[Brandi]

Brandi - wasn't the baby being treated at Children's Hospital of Orange County? I was on their website - it looks like a pretty good place.

Best wishes and blessings to your family, especially Baby.

Yea she was there. I know it is a good hospitol too. It's funny you have Blossem as your avatar. They are my nieces favorite right now. Seems a bit rough for a 2 year old to watch but my sister says they crack her up! Which is good. Lore always says "Bubbles funny"!