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  #1  
Old Thu Aug 31, 2006, 09:40 AM
mo_shane mo_shane is offline
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Location: troon, scotland
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Post shane's story

hello to all,

i wasn't sure where to begin here, whether to post in paediatric, transplant or aplastic anaemia. anyways, thought this was the best starting place...

i'm a single parent of 3 boys - shane and ryan, 12 years (identical twins) and adam 4 years old. our story starts with shane losing his appetite and feeling tired lots. this was back in may 2004. we saw a paediatrician in june who took blood and other than him being slightly anaemic, concluded he was fine and i was worrying for nothing.

by his second week back to school in september, he came out in that odd pin prick type brusing. i'm still not sure if it's called perpura or petechiae (had to look that up!). from the GP, we were sent directly to hospital. they did blood counts and kept shane in overnight for observation. we were discharged the next day with a diagnosis of ITP. well, i do go on, so will try hard to make this short now

finally on october 4th 2004, he had his first BMB done and confirmed it was severe aplastic anaemia. apparently the percentage of bone marrow cellularity was just 5%. his counts were as follows: wbc 2.8, anc 1.6, hb 5.5, plts 0

a couple of weeks later, his anc was down to zero so he was then categorised as very severe AA. we had to quickly move to transplant as he was getting infections at the drop of a hat. by november he had his third central line (or wiggly as they called it on the kids ward) put in ready for transplant. ryan, his identical twin was his donor. on november 11, 2004, shane had his transplant. the first neutrophils appeared on day +14. he was finally discharged january 4, 2005. that's exactly 3 months from diagnosis through tranplant and discharge. we hear that is something of a record here

apart from the odd infection, tonsilitus, flu, shingles, we have done pretty well. shane is now 20 months post transplant and finally (as of last week) off all drugs!

i do have some concerns and questions, so will be posting here again soon.

thanks all for listening and thanks to those that created this forum - it was well needed. i have a feeling it's going to be very popular.

gina xx
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  #2  
Old Thu Aug 31, 2006, 04:14 PM
Covergirl Covergirl is offline
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So happy to hear of Shane's progress. God bless you all.
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  #3  
Old Thu Apr 5, 2007, 12:47 AM
fibogann fibogann is offline
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Gina story about son Shane

Hi Gina,

I'm really happy and thrilled to read the story of your son who had a successful Bone marrow transplant from his identical twin brother.
It's just so wonderful to know of the smooth progress, and of his getting off all drugs.

Take care.

Peter Lim
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Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
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Old Thu Apr 5, 2007, 06:42 PM
mo_shane mo_shane is offline
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Join Date: Aug 2006
Location: troon, scotland
Posts: 25
hi cover girl and peter,

thanks so much for the kind words. it is always good to hear others respond as you know yourself you have done so well, but to get that clarified means an awful lot

i'm not quite up to date with this forum, but i have seen your name in the AA forum peter. you also have a son with AA. i wish you the best of luck. we truly have been very fortunate throughout the whole ordeal (crosses fingers).


gina xxx
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