Post Bristol!

1st July > current day

Very briefly as I'm sure you've all had enough of our lives...................


Well, we've survived our 2 months in Bristol & it really wasn't as bad as we anticipated.

So now, we're back home, visiting Addenbrooks PDU (paediatric day unit) twice a week on a Monday & Friday for Full blood count, cyclosporin levels & an IV dose of anti-fungal.

Joe's steroid dose is reduced twice a week so by Monday 14th he will be off steroids & they will then review his need for IV anti-fungal - this could mean less trips to Addenbrooks & being allowed oral anti-fungal which can be administered at home - small steps but positive steps

On Wednesdays we have the community nurse from Lister come round to our house & do bloods & medication.

Generally Joe is feeling OK but so very, very tired.

Hoping Mike, Joe's consultant will give us the OK for school in September - Joe desperate to be there for the first day at least as he's missing contact with so many of his friends - this can be improved once he gets a bit more of an immune system after day 100 & as of 9/8/06 he is day 82 - not long to go!

Thursday 17th August will be another milestone for us all - Joe's first 3 monthly check 'post transplant' in Bristol - wish us luck!...........

Well, the check up went well. Our Bristol consultant, Jackie Cornish was very pleased with him even though Joe is still suffering from a bit of GVH. Although Joe gets extremely tired & has to have at least one mid-day sleep, she assures us next check at 6mths, Joe will have bags more energy. Lots more to write as soon as I'm able. (still lots of borin time spent back & forth to hospital - todays session took a marathon 6.5hours!......................) but good news - Joe's central line can now be removed (thanks Mike  ! - provisional date - Friday 1st September - same day as Matt's BMT.............. 


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