Offline
CEK40 wrote:
april6263 wrote:
CEK40 wrote:
That is probably best for her...Not for you I am sure....
Is your mom with you???yes....mom's staying at the hospital with me so I don't have to be here alone....and we have had alot of other friends and family in and out
That is good you are not there alone...and then you have all of us here with you too...doing as much as we can so very far away...We all wish we could be there with you so badly....We and I am speaking for the "sisterhood" kinda feel helpless....
you guys are helping me so much more than you could know.....you guys give me a place I don't have to be the rock for everyone and can just lean on some one else for a bit .....and that is huge
Offline
CEK40 wrote:
LuvSeason18 wrote:
april6263 wrote:
yeah but no luck so far....she is testing negative to everythingThat complicates matters. A person almost wishes that a positive test would show up so they could start fighting that. HUGS
I agree Luv...April...did Niecey ever have any allergies before she got sick in the beginning???
no pre-cancer she was as they say "healthy as a horse"
Offline
april6263 wrote:
CEK40 wrote:
april6263 wrote:
yes....mom's staying at the hospital with me so I don't have to be here alone....and we have had alot of other friends and family in and outThat is good you are not there alone...and then you have all of us here with you too...doing as much as we can so very far away...We all wish we could be there with you so badly....We and I am speaking for the "sisterhood" kinda feel helpless....
you guys are helping me so much more than you could know.....you guys give me a place I don't have to be the rock for everyone and can just lean on some one else for a bit .....and that is huge
You just be you.....and say what ever you need to say.....feel...or whatever.....we will be glad to "carry you" in whatever way we can.
Offline
I'm going to have to log off.
Thanks for giving us a little more information, April.
We will be praying for enlightenment for those caring for her.
Much love.
Offline
View from the Crow's Nest wrote:
april6263 wrote:
LuvSeason18 wrote:
Probably for the best; however, that has got to be hard.yeah....I just want to hear her voice
This breaks my heart, April...
I know....
Offline
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
Offline
LuvSeason18 wrote:
april6263 wrote:
LuvSeason18 wrote:
So, really the major issue is the auto-immune issues?the main issue is if it was just the auto-immune thing they could give her high dose steroids and calm it down....but with the pneumonia if they do that it will hinder her ability to fight the pneumonia....so they can't do that....so the question we need answered is.....how can they calm down the auto-immune response with out hindering her immune system???????
Ah......I will ask that to my friend.
that's the most important question.....even over ....for right now.....finding out what it is
Offline
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
Maybe it is something so rare that some doctors are not aware of it.....is there a website or something that might list rare disorders??
Offline
CEK40 wrote:
View from the Crow's Nest wrote:
april6263 wrote:
yeah....I just want to hear her voiceThis breaks my heart, April...
I can't even imagine how you are dealing with this...You are doing what any of us as mothers would do and I am amazed at your strength.....
thank you......Niecey always says .....you just gotta do, what you gotta do
Offline
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
There is also an article done by Childrens Hospital of Philadelphia I am reading it now...it is pertaining to an autoimmune blood disease...don't know if that is what she may have or not....I just saw that it has mentioned treating patients that can't take corticosteroids...
Last edited by CEK40 (6/28/2017 9:27 pm)