Days become weeks and weeks become months.. Here we still are, another week on with no firm discharge date in place.  In fact, following his spiked temperature last Sunday,  Fabian took a turn for the worse as our old friend GvHD returned with its accompanying disruption to normal bodily functions.  The skin rash, which is symptomatic of this post transplant reaction, is rather unpleasant so I thought I’d include a photo with this entry to illustrate the point!  So back on steroids, immune-suppresants, GCSF etc. All clinical reasons to keep him in hospital.  However, I can report that there have been signs of improvement and at least a treat for Fabian has been the doctor’s decision to allow him brief periods outside.  Armed with his scooter, he has loved these brief forays into the nearby park, even though he catches attention with his bald head and mask.  The temptation to jump on a bus and head for home is strong!  But soon enough it’s medication time and back to Fox ward he goes.  I’ll say a word about the nursing staff, since the press is currently projecting the NHS as full of disgruntled nurses, most of whom would leave given the chance.  Our observation is otherwise and we find them always professional and committed.  Each nurse relates very differently to Fabian but they all enjoy being his carer when their turn comes round.

In terms of the genetic treatment we have had a setback in that the lab have been unable to generate enough T cells from the original sample and now require Cassia to give further blood.  This will delay the infusion into Fabian by a further 6 weeks 🙁 though we are assured by our consultant this will have no bearing on the overall outcome (bear in mind hardly anyone else has had this treatment!).  I’m praying for more patience, but please God, hurry up.


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2 Responses to Setbacks

  1. Vicky

    Having recently escaped isolation in Bristol BMT unit after “only” 5 weeks I feel your pain. Life since then on their purpose built adolescent ward feels like “Butlins” in comparison to life in isolation. My daughter is currently being treated for ?GVHD & HHV6 infection in her blood but I think things are generally going in the right direction & many people at home in Ireland & here in England are supporting us in prayer. I plan to follow your blog & pray for Fabian.

    • Darrell

      Thanks for your interest in our journey. Always good to hear from those on similar paths and we wish you all the very best with the treatment and a positive outcome. God bless you, Darrell and Lydia Bate

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