This past week

Our stay in the hospital was a couple days longer than we had expected b/c of fevers and the nausea that came w/ it.  But we have been home now for 1 week.  He started the Erwinia while in the hospital and had another shot of it yesterday.  They also drew counts b/c he had been on GCSF for 3 days.  Much to our surprise it hasn't worked yet.  Usually 3 days is all he needs, but not this time.  Yesterday his ANC was 20!  And his platelets were 10, so as you can guess he got a transfusion of platelets yesterday.  When we got home his shirt was covered in blood.  Apparently the platelets hadn't had time to work yet and when the de-accessed his port he continued to bleed.  Scared the life out of me, but a little pressure and he was fine.  We got back up for another shot tomorrow and then again on Friday (his 5th birthday) so I'm hoping that his counts will show signs of recovery tomorrow and that he won't need anymore blood products.  But considering his hemoglobin was 9, I won't be surprised if he needs blood.  I hate to see that this is what we have to look forward to for the next 6 months or so depending on delays in treatment.  Shockingly none of this seems to be affecting him.  He is happy and bouncy, a little more tired than usual but otherwise good.  Which is nice to see.  We took a bike ride yesterday once we got his port to stop bleeding.  He was a little upset that I wouldn't let him ride his new 2 wheeler but I explained to him that the big wheel was safer w/ his platelets being low.  Though he got a transfusion I am not sure how much they helped so I'd rather be safe than sorry.  He understood and was happy that I was letting him go.  The way I look at is is that he should be able to live as normal a life as possible if we take simple precautions like helmets and elbow and knee pads on a big wheel! lol  His counts will keep him out of the public so I don't want him to lose playtime outside.  He knows his limits which helps alot.  He understands what it means when platelets and counts are low so there isn't an argument if he can't do something.  I guess that is pretty much all for now.  Life has been good, difficult at time for my little man w/ his nightly injections of GCSF etc but we are all doing well and holding it together.  I'll try to post again after clinic tomorrow.