We’ve now settled into the familiar routine post chemo of daily temperature spikes, antibiotics and waiting for count recovery. It is a war of attrition. The lagged effect of the intensity of this block hit Fabian about 6 days after its completion in the form of neurological symptoms. His personality seemed to have been totally suppressed and for a while he responded to nothing and no-one. Concerned there may be a neural infection the doctors did an MRI and lumbar puncture but thankfully both confirmed this wasn’t the case. As anticipated, he has needed a nasal gastric tube inserted since weight loss has become a growing concern. This is something Fabian absolutely detests but it was able to done under general anaesthetic for the LP. Now, in the last 48 hours he is returning to normality and it is a small but joyeous thing just to see him take a few bites of food. Despite having a battery of chocolate eggs, this was the first Easter we have seen where our son has not devoured them in quick time!
With regards to the potential treatments we have since heard that funding has been approved for the chlorfarabine and a referral has been made for the immunotherapy trial though both of these will depend on the outcome of his next bone marrow aspirate in 2 weeks time. The extent and depth of research into treatment for leukaemia is phenomenal, often made possible by charitable donation alone as there is insufficient ‘return on investment’ for the drug giants to prioritise this. Drugs alone, though, will never cure a spiritual cause and we are seeking to understand what roots there may be that could have caused this disease so that these can be cut off once and for all.