Nic Roy
Welcome to our sons Web Page... It has been provided to keep family and friends updated...
Nicolas was diagnosed with Adrenoluekodystrophy shortly after his birth...
Nicolas is now home following two Umbilical cord blood (stem cell) transplants at Duke University Medical center in North Carolina
*HUGS* TOTAL! give Nicolas more *HUGS*
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Journal
Sunday, October 11, 2009 7:43 AM CDT I cant believe it has been 2 years since we have updated! I didnt realize it had been that long. Nicolas is now over 5 years post transplant and he is doing great. He is in 2nd grade this year and has been playing soccor and is going to start ice hockey soon which im not really happy about but he says he wants to do it. we will see how it goes. He still doesnt have the same strength as other kids his age. His 5 year follow up at Duke went well. All of his test came out NORMAL and his MRI remains unchanged which is good. His donor count remains at 97 He still has the adrenal Insufficiency which he will have the rest of his life and he is going to need some dental work as i think the chemo did a number on his teeth. He is still a good sweet boy but he has become quite bossy these days. Hes also been suffering some anxiety in the last month and at times is dizzy and worrys that hes going to die. the sad part is that he's embarassed by whats going on his mind so im hoping that if i can get him to talk about it more i wont have to put him on meds, though i am not against it. All in all things are going well, life in a sense has moved on though i dont think things will ever be the same for any of us. I still cant imagine living on this earth without him!
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Hospital Information: Home! 361 maple street White River Junction, Vermont 05001
Links: http://www.rainbowofheroeswalk.org Duke Rainbow of Heros Walk http://stopald.com Web site that led us here to Duke http://www.aldlife.org
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