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06/02/2008 02:35
auckland
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I have a beautiful 14 yr old daughter with type 1 who was diagnosed at 8 due to spots. Seven weeks ago she had spinal fusion on 9 vertibraes. She is doing fantastic and looks so different. She has had to have 3 MRI due to pain in the last 6 months. We have discovered she is riddled with fibromas and plexi form ones especially at the top of her spine and in the scacral area. Our specialist said she has never seen a child with so many> We have to go to Australia in two weeks to have PET scan - they fear cancer. Its crap - sorry - but I HATE this worring and the continually WAITING to see how the condition will be> I try not to set myself up with the worst case but so offten it comes back as being that especially over the last two years.. puberty is cruel. No history in the family.

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06/18/2008 20:20
prvenkatr
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My heart goes out to you. I understand how tough a time you would be going through. My prayers are with your daughter. My love for her. Let's put all our burdens on the creator and wait,hoping for the best.

My salutes to your courage you,as a mother have!!Please Keep that spirit.

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06/29/2008 13:58
Tomu
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my heart goes out to your daughter i have had nf1 my whole life i too have very bad back pain i have a lump the size of a golf ball in my lower back which causes me pain.i too had cat scans but they can't find anything.my prayers go out to you and your family good luck with everyting and have a great day.tomu

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11/16/2008 14:40
beauty4ashes
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It is okay to vent so please do not be sorry... that is what this place is for! It is a healthy release, and helps others to know what is going on with you. Not just your daughter & her condition, but YOU, too.

NF can be very stressful because you just can never know what to expect that each new day, month, or year will bring. I understand what you mean... we don't want to 'borrow trouble' if it isn't there, or yet, but that is often easier said than done. The important thing to remind yourself of is that this really is a day to day condition, therefor you should strive to just take one day at a time.

Your emotional health is important in keeping you strong in this fight, and so I am very happy to see you here with us. I hope you will continue to post, and to keep us informed on how you & your daughter are doing.

Did you get the PET scan done yet? You are in my prayers~

(((BIG HUGS)))

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
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"The unanswered questions aren't nearly as dangerous as the
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I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
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"There's always light at the end of every tunnel, just pray it's not a train! "
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Faith makes things possible, not easy!
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