update on my niece.

[Brandi]

Things are going down more now. She has stopped waking with swollen eye's. Both my sister and her dh have a bad case of the flu right now. They are hoping the baby doesn't get it too.
She has started to loose huge amounts of hair. We are waiting to see what the Dr says. But i have known a couple kids during times of great stress loosing their hair after stress or sickness. I hope that is what it is.
But things are ok. Not pefect but ok.

[RoadRaven]

Oh Brandi
How disheartening after such good initial prgress.
I really hope the doctors find an answer REAL soon
Its so awful when little ones are unwell and they can't tell us how they feel and we can't explain that we can fix it.
Awhi Ahwi to you all

[Brandi]

Thank you!

[Brandi]

Just to let you all know. My sister got a call from the oncologist They sent a tissue sample out to 3 different people to read. The first two, nothing. But something has come up we think. The Dr's secretary called and said they got the final results and the Dr wants to discuss it. But not to worry. My sister of coarse started crying right away. I told her not to worry if the Dr said that. And that maybe cause it was the last test to be read maybe there is nothing and he wants to talk about what to do next.
So please again keep them in your thoughts through the night that tomorrow will be no big.
But the baby has not improved much. So strange!

[DebG]

Oh Brandi, I am so sorry. I so wish we could just wave a magic wand, and say "be gone with you, leave this child in health"! I'll keep your family in my thoughts today, wishing I could send you all some cheer, sunshine and relief from worry.

[rocknrollgirl]

I will keep you al in my thoughts today. I hope the news is good news.

[sundial]

I'm keeping you and your family in my prayers and I hope the family gets to feeling better soon. The flu is no fun and it's especially hard on the wee ones.

[RoadRaven]

Hey Brandi, I imagine the tears are close because when we are on emotional tenterhooks, all emotions are right at the edge of jumping out - so tears and laughter can be there at the same time. Its not surprising she burst into tears.

Keeping your neice in my thoughts again today
Rave

[Wahine]

Thinking of you and your family.

[Brandi]

Baby has been diagnosed with a very rare cancer. I do not know much more then that at this point. They are doing a bone biopsy to confirm it. I can not seem to get a hold of my sister at this point.
When she called we were at the hardware store and i started feeling weird and almost panicky. You know I am standing in the middle of a store surrounded by strangers while getting bad news over my phone. I told her I had to get home and would call her when I got there.
Well before I did that I needed to get permission from a friend who has gone through this with her little girl to give my sister her #. She offered last year when the baby was sick if something came up. She is a support person now with parents with sick kids.
We talked for awhile about how I felt and she gave me some good insite on how my sister is feeling as well. and she made me feel better about being on this side of things and said to give my sister her # and email. Email incase she feels wierd about talking to a stranger at first then work up to the phone call.
This is really weird for our family. We don't have things like this happen.
This is the clinical name Langerhans' cell histiocytosis. Thank you for all the positive thoughts from all of you. I just wish i could have given better news.

[LBTC]

{{{{{{{{{{{{{{{{{{{{Brandi}}}}}}}}}}}}}}}}}}}}}}

I'm so sorry that you couldn't have heard better news. You will all get through all of the ups and downs of this together, and we'll be here for you whenever you need us. I believe that healing can be helped by purposefully finding and pondering beauty and joy, so I send a pretty picture out daily to a long list of people. If you and/or your sister would like to be added to that list, PM your email to me and you'll start getting them right away. (click on my link below to see what the pictures are like)

peace, hugs and butterflies,
~T~

[Flybye]

Brandi - I am so sorry to hear about your niece. Cancer is so hard on the family and when it happens to children it seems so unfair and unbearable. How are you holding up? If I can offer some advice it would be to make sure you can scrap together the money and time to see your sister and your niece - they will need a lot of family support to get through this. Not only that, it will be easier on you, too. Sometimes the hardest thing about illness is being far away and not being able to see the ones you love.

I don't know where you live or where she lives, but if I am somewhere in the middle and you need a place to stay and a meal - I would love to support you in that way.

I know how you feel getting a call like that in the midst of people -I received a call that my grandfather had a stroke while I was at my husbands Christmas party - all I wanted to do was get out of there and fast.

I will continue to keep your family in my prayers.

[Mr. Bloom]

((((((((Brandi)))))))))))

Here's a site regarding this in kids:

http://www.histio.org/site/c.kiKTL4P...m?src=overture

Quote:
Over the years, cancer treatments have been used in patients with histiocytosis. Consequently, hematologists and oncologists, who treat cancer, also treat children with Langerhans cell histiocytosis. However, the disease is not cancer. Radiation therapy, if used, is given in much lower doses than that which cancer patients receive.

The vast majority of patients will survive the disease.

Prayer flares going up! I'm really hoping for the best to come out of this

[OakLeaf]

((((((((Brandi, baby & family))))))))

[Brandi]

Brandi - I am so sorry to hear about your niece. Cancer is so hard on the family and when it happens to children it seems so unfair and unbearable. How are you holding up? If I can offer some advice it would be to make sure you can scrap together the money and time to see your sister and your niece - they will need a lot of family support to get through this. Not only that, it will be easier on you, too. Sometimes the hardest thing about illness is being far away and not being able to see the ones you love.

I don't know where you live or where she lives, but if I am somewhere in the middle and you need a place to stay and a meal - I would love to support you in that way.

I know how you feel getting a call like that in the midst of people -I received a call that my grandfather had a stroke while I was at my husbands Christmas party - all I wanted to do was get out of there and fast.

I will continue to keep your family in my prayers.

I am ok.....have a lot of guilt. Not knowing what to say or do. Wanting it to me,not them. My sister is not talking to anyone right now which is strange for me. She always wants to talk. But I am giving her her space right now.
We live abut 5 hours away from eachother. i normally would go see her by taking a train. We only have one car. Right now I don't think is the best time to go see her. I am not sure when the right time willl be even. We will see. I have cried a lot today. But I have looked up the cancer (thanks to Mr. Silver's link. It is a high survival rate so that is good of coarse as long as it hasn't spread. Just taking it one day at a time at this point.
Thank you for your sincere thoughts. You are all so wonderful to have as support!