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Happy Holidays!

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13 years 1 month ago #29894 by crystal lee
Happy Holidays! was created by crystal lee
Just wondering how everyone is doing?? Happy new year's..

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13 years 1 month ago #29898 by Val715
Replied by Val715 on topic Happy Holidays!
Happy New Year! How is your little guy doing? Hope all is well.

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13 years 1 month ago #29904 by crystal lee
Replied by crystal lee on topic Happy Holidays!
Hey Val

He is still below 20, but hanging in there. I feel overwhelmed at times, but than I remember how bad it was 18months ago, his mouth was always bleeding, constant blisters, I would bruise his legs just trying to change his diaper..It was like that almost entire year..So I must say he is doing much better now!! (And I gotta keep reminding myself of that)..Is your son still holding in those terrific numbers?

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13 years 1 month ago #29905 by alisonp
Replied by alisonp on topic Happy Holidays!
Not quite new year yet here, but I hope you all have a much better 2013 in terms of platelets anyway.

B)

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13 years 1 month ago #29923 by firkins
Replied by firkins on topic Happy Holidays!
Hi all -- so sorry, Crystal, he is not doing better on the platelets, but I'm glad at least the symptoms are improving. I find it reassuring even if the numbers aren't great when Mia isn't bruising or bleeding in any way. Are you doing any treatments now? or ? Sorry I've been so out of touch. busy fall on our end. best, firkins

Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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13 years 4 weeks ago #29943 by crystal lee
Replied by crystal lee on topic Happy Holidays!
Nope still not treating, 5-6weeks ago I really thought about it. Got pretty frustrated, he had gone up to 20 (while sick, of coarse) and dropped again, he has had ITP half of his life, and can't even get to a "safe" number. I felt defeated and felt (maybe still feel) he isn't gonna get better on his own. So I called his hematologist and she said I agree with you about the risk of Rituxan and 6mp, and he is doing well symptom wise Soooo...We are just hanging out and trying to hang on to hope.

How is Mia doing?
Oh and I do very much agree with it not being so hard when he doesn't look as bad. Some days just seem to be harder. His little brother 18 months old now, keeping him safe felt hard before, now there are days I just close my eyes and pray!!

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