Sitting in the Marsden next to Fabian whilst he sleeps soundly, a beneficial side effect of the intense chemo block he has just finished. Unfortunately, there are other less pleasant ones such as diarrhoea, sore eyes and loss of appetite which all blight him at present. The strength of the chemo reduced his blood counts to zero within a few days and it will take 2-3 weeks for this to recover sufficiently to be discharged. We expect, though he’ll need a second block to achieve remission and in anticipation of this the doctors have applied for funding to use a newer drug, chlorfarabine, that is not yet available on standard protocols. There is a hefty price tag for each cycle so we have to be hopeful that our local PCT is not one where the postcode lottery for funding works against us. Looking ahead to the transplant, we have also heard that Fabian may be offered the chance to join a new clinical trial which will test groundbreaking gene therapy techniques to improve the effectiveness post transplant of the donor T-cell lymphocytes. In simple terms, this should make them better hunter-killers of leukaemic cells. This may mean a move to Great Ormond Street hospital if all goes ahead. So these are exciting developments for us in terms of accessing the best and latest treatment.
Casting back a week, our trip to Legoland was a much-needed oasis for the family – literally, as it was very wet! We followed this on our return with an impromptu birthday party for Fabian, complete with Lego cake that had been kindly donated to us. Easter, though, will be spent on the ward so the traditional egg hunt will be confined to bed 3; but on the bright side, at least we get to avoid this “spring” weather.