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Old Fri Aug 2, 2013, 11:30 AM
topcow topcow is offline
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Join Date: Jul 2013
Location: McPherson, KS U.S.
Posts: 8
Thank you so much for the replies!

It is funny that your name is Evansmom, because my son's name is Evan too! The encephalitis in 2004 left him with mild brain damage, so he is more like a 7 year old than a 15 year old. So taking care of a port would be my responsibility.

We are having our other 2 sons tested next week to see if they are a match for Evan. His last blood work was done on July 22 and his counts were :WBC 3.64, HGB 10.4, platelets 194, HCT 33.1, and Retic 5.2

These numbers are higher than usual, because he was hospitalized in April and received his first blood transfusion (2 units). He sometimes aspirates during a seizure, chocking on his vomit, and it causes infection in his lungs. I can not imagine how much worse these infections would be if he was on Soliris and his immune system was even weaker!

We are getting another opinion from Dr. Dipersio at Siteman Cancer Center in St. Louis soon. Just waiting for an apt date right now.
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