update on my niece.

[Wahine]

If it comes up I will know where to go for infonow. Thank you. She is 2 though i don't knw how well she would take that kind of treatment?

For young children needles are not usually used, they use laser or some other form of stimulation for the acupuncture points. And like so many other treatments, children usually respond faster and more sucessfully than adults.

Take care.

[KnottedYet]

(((((((Baby, Brandi, Family))))))))

[smilingcat]

Dear Brandi,

With kind words and helpful information from Mr. Silver, you have more than a hope for a cure. Yes having this thing is a bad news; but now, you, your sister and the doctor know what it is. This is a step forward.

I know it is hard to think of positive things in times like this. Most of us would be consumed with despair especially when it happens to a beautiful little child; but, the bad news is lessened with the knowledge of what it is and that it IS CURABLE.

When the feeling overwhelms you, remember that it is CURABLE. I know it is easier to say than taking it heart. Do try though.

My thoughts are with you, your sister and most importantly your niece,

wish her a speedy recovery,
most sincerely,
Shawn (aka smilingcat)

[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"!

[Brandi]

For young children needles are not usually used, they use laser or some other form of stimulation for the acupuncture points. And like so many other treatments, children usually respond faster and more sucessfully than adults.

Take care.

Really? That is good to know. I will keep that idea at hand.Thank you again for the info.

[mtbdarby]

Brandi - my thoughts and prayers are with you and your family. You've gotten lots of great advise here and I can't really add to that.

Maybe your sister hasn't called to talk because she is so busy doing the same thing you are - gathering information. Or she needed time to heal after all she'd been through before and gather her strength for the upcoming battle. Give her the benefit of the doubt and a few days and call if you haven't heard from her. You two sound close and she's gonna need you.

((Hugs))

Dar

[Brandi]

Brandi - my thoughts and prayers are with you and your family. You've gotten lots of great advise here and I can't really add to that.

Maybe your sister hasn't called to talk because she is so busy doing the same thing you are - gathering information. Or she needed time to heal after all she'd been through before and gather her strength for the upcoming battle. Give her the benefit of the doubt and a few days and call if you haven't heard from her. You two sound close and she's gonna need you.

((Hugs))

Dar

TY!