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Post by kg91207 on Aug 20, 2010 18:51:43 GMT -5
First of all I have to say that I am very glad that Kaelyn is still healthy and going strong. But...I've been diagnosed with langerhans cell histiocytosis. A very rare disorder, about 1 in 200,00 children and 1 in a million adults gets it. It's cancer-like but not cancer, and some doctors think it's an autoimmune thing. Anyway, I see a hematologist/oncologist next Wednesday for follow up. From what I've read, they will have to so several more tests to determine the disease's progression and course of treatment. Looks like it will be chemo depending on where it all is. I just pray that it is not in my organs or bone marrow!
I did connect with a friend from elementary school who's 5 year old son was diagnosed with LCH when he was 15 months old. She's given me some advice and told me a lot of their journey with the disease.
Kaelyn did great in her therapy this week. We've been in touch with the school district about getting her initial ARD set up. We're planning an Elmo themed bday party for her next month. I can't believe she is getting so big!!
my mom is back in her own home and receiving hospice care. Now we play the waiting game.
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Post by rlm08 on Aug 20, 2010 19:22:59 GMT -5
I am so, so sorry to hear. 1 in a million is pretty rare, although after being pleasantly surprised with my Reina, statistics mean nothing to me. My thoughts and prayers will be with you. Glad to hear that Kaelyn is doing well!
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Post by kg91207 on Aug 20, 2010 20:58:30 GMT -5
Corinne, that is exactly right-statistics quit meaning anything to us 3 years ago!!!
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Post by Jackie on Aug 21, 2010 8:17:34 GMT -5
Brandi...now we really do need to have lunch.....
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Post by mg12061 on Aug 22, 2010 9:03:25 GMT -5
We're with you on that one too...Statistics mean nothing ot us either. The disease Kathleen waws diagnosed with 8yrs ago statistices were also 1 in a million... Can you tell us more about this disease if you don't mind me asking. Mary G.
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Post by Googsmom aka Jennifer on Aug 22, 2010 14:36:22 GMT -5
{{{{{{{{HUGS}}}}}}}
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Post by kg91207 on Aug 22, 2010 21:56:55 GMT -5
It is an overgrowth of white blood cells. It was be just on the skin, or can be in your organs. I guess they will do a bunch of tests/x-rays/scans to determine where it all is on me. Usually use chemo and/or steroids as treatment, depending on progression/location. My appt. is Wed. and it can't get here soon enough!
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