Monthly Archives: February 2012

Rare Disease Day – Feb. 29th, 2012

Kristy updated her twitter status: ‎2day is Rare Disease Day My son & many others have fought so hard against Histio I hope some1 finds it n there heart 2 help bring awareness

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HLH Awareness is so important

Kristy updated her Facebook status: HLH is now being diagnosed in young adults and older awareness is so important. It’s not labeled as CANCER but treated with the same meds.

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Thank you to everyone that went to New York to raise Histio Awareness

Kristina updated her FB status: “Thank you to everyone that went to New York to help raise awareness for Histio. It means so much to me! I hope next year I can join you all. I was wonder if anyone … Continue reading

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Help Raise Histio Awareness – FEBRUARY 24-25, 2012

 Please help raise Histio Awareness RARE DISEASE DAY PRESS RELEASE (PDF File) NEXT YEAR’S CAMPAIGN WILL BE HELD IN NYC FROM FEBRUARY 24-25, 2012.  PLEASE CLICK ON THE LINK BELOW FOR DETAILS! https://www.facebook.com/#!/events/252239901479695/  http://www.liamslighthousefoundation.org/awareness_campaign.html Liam’s Lighthouse Foundation 3rd Annual Histiocytosis Awareness … Continue reading

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DAY +282/83 Done with his Tacrolimus

Liam is all done with his Tacrolimus! I hope he will never need it again. We will have to watch him closely for GVHD.

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A medicine to treat childhood leukemia is in such short supply

‘Crisis’: Supplies of life-saving drug used to treat children could run out in 2 weeks www.msnbc.msn.com A medicine to treat childhood leukemia is in such short supply that hospitals may exhaust their stores within 2 weeks, leaving children at risk … Continue reading

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DAY +273 Clinic Appointment

Kristy’s Update – Feb. 9, 2012 Liam weighed 22lb 11.3oz, 30.4 inches all labs were in the normal range he will b off immune suppressant Feb. 16 & starting hydro ween!

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The Selflessness of a Nurse…

Kristina updated her Facebook status: 2/3/2012 12:12:04 A.M. Pacific Standard Time “Nurses are being scorned for being late with medicines by one minute sometimes, yet they are holding their bladder because they don’t have time to use the restroom, starving … Continue reading

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Another Day

When I write in my blog I write my try emotions in hopes that other family’s who have a child with a life threatening illness will see there not alone in there thoughts. I haven’t posted in here for a … Continue reading

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“the best response to “-at least it’s not cancer”

Subject: Kristina updated her status Date: 1/31/2012 11:49:02 P.M. Pacific Standard Time “the best response to “-at least it’s not cancer”. -Yes, you’re right! Thank God! It’s just Histiocytosis, also known as the “You’ve got cancer in your autoimmune system”-disease, … Continue reading

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