I’ve titled this entry after the name of this moving video which charts the story of a little girl in the States who underwent similar gene therapy to that which Fabian will receive and had an amazing outcome. It may seem over-dramatised, but the outcomes are true none the less. We really feel honoured to be selected for this groundbreaking trial here in the UK. It’s timely for me to share this, as most of today was spent at Great Ormond Street Hospital during which they collected the vital blood sample from Cassia that will be genetically treated ready for infusion into Fabian later in July. To see those test tubes with their precious contents being packaged up was both profound and yet mundane. The bureaucratic paperwork that followed was most certainly mundane but then there are a vast array of researchers and agencies whom we must consent to providing Fabian’s treatment data.
I’m also pleased to report that his blood count has bounced back remarkably well. Platelets and neutrophils have tripled in the past week – signs of his marrow getting back into full production. But now maintenance chemo has started up so we expect these will drop again 🙁 Nevertheless we have 3 or 4 weeks before his planned admission so hopefully some nice day trips in between Marsden daycare trips to enjoy. Other signs of new life at home are that our rabbits have produced a clutch of babies and mother hen is sitting on a dozen eggs so the household is feeling quite broody. And on that note I should end.