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