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.kiKTL4PQLvF/b.1764433/k.8BCD/LCH_in_Children.htm?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!:o

[Brandi]

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

Here's a site regarding this in kids:

http://www.histio.org/site/c.kiKTL4PQLvF/b.1764433/k.8BCD/LCH_in_Children.htm?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
Thank you for that Silver family most sincerly for the link. It gave me a much better outlook on it. We just need to find out exactly what type she has I guess. I don't feel as shocked now that i have more knowledge of what it is about. Something to say for knowledge is power.

[Wahine]

Brandi - I'm sorry to hear about your news. It will be a tough go for your family. Try to hold onto the fact that the prognosis is good. Now that you have a definite diagnosis, things can move ahead. Acupuncture in conjunction with standard treatment can help lessen side effects and boost the immune system. If a times comes when you'd like more information about this please feel free to PM me.

You and the family are in my thoughts.

[luv'nAustin]

(((((((Brandi & Family)))))))

I am sorry to see that your update isn't the good news that we were hoping to hear. I'll be keeping you all in my prayers.

[Brandi]

Brandi - I'm sorry to hear about your news. It will be a tough go for your family. Try to hold onto the fact that the prognosis is good. Now that you have a definite diagnosis, things can move ahead. Acupuncture in conjunction with standard treatment can help lessen side effects and boost the immune system. If a times comes when you'd like more information about this please feel free to PM me.

You and the family are in my thoughts.
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?

[Brandi]

(((((((Brandi & Family)))))))

I am sorry to see that your update isn't the good news that we were hoping to hear. I'll be keeping you all in my prayers.
Thank you and I am sorry i don't have better news as well.

[RoadRaven]

Hugs from here too Brandi... at least you have an answer and a name for the monster you will be battling.
You'll all be in my thoughts when I light my evening candle...

[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]

Hugs from here too Brandi... at least you have an answer and a name for the monster you will be battling.
You'll all be in my thoughts when I light my evening candle...
Thank you very much.:o

[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.

[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.

[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!

[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"!