TUESDAY, SEPTEMBER 27

When I began this journal I recognised that there would times of writing painful entries alongside those that were more upbeat.  This is such a time.  As mentioned last time, we had been expecting results of the latest bone marrow aspirate.  For a number of days it has felt like the sword of Damocles hanging over us and I had a resignation in my spirit that the news, when it came would not be good.  Prior to this Lydia and I had shared in church and received prayer. Ironically, the pressures of being in a christian community make you not want to let people down or see their faith rocked when news is disappointing.  In reality, few things outside our control go the way we expect and wishful thinking can sometimes be mistaken for faith.  So to come to the point, our consultant confirmed today that sadly Fabian was not in remission, having 10% blast cells and a positive MRD signalling that his disease is drug resistant. The chemotherapy therefore has failed and he will now require a bone marrow transplant.  This is the news we never imagined having to hear about our own son.  Someone else’s – but not ours.  The odds are impossibly low; each year approximately one in 25,000 UK children under 14 contract leukaemia, one in a hundred thousand relapse and one in two hundred thousand have a transplant.  So we will join a very unique club indeed.  A few we already know on the ward and it will be a comfort to share our journey with them.  The road ahead is now very different from the one we began back in July.  The chemo will continue until Fabian is in full remission, and a further BMA on 10th Oct will hopefully confirm this.  There will be much discussion and preparation for the transplant in the weeks ahead involving a whole new medical team.  The Marsden is one of the UK’s largest centres for transplantation and we must constantly remind ourselves that we are in the best possible hands.  There is now every reason to believe Fabian will be ultimately cured.  Transplant is make or break whereas chemo only ever gives you long term remission.  Those of you who remember the film ‘Deep Impact’ will understand when I say our battle against leukaemia resonates with that story.  The world faces extinction threat from a meteor collision. A spaceship named Messiah attempts to blow it up in space but only succeeds in splitting it and diverting the larger of the two pieces.  A last ditch mass nuclear missile launch fails to stop the meteor.  At this point the President goes on air to state, ‘We hope for the best but plan for the worst’.  Finally, the smaller piece hits earth and causes widespread destruction but extinction is averted and a remnant survives.  Fabian, is and will be a survivor.  He has strength of character and a living faith that is an inspiration to us.
There will be much more to tell in the days ahead and as ever, we thank you for standing with us.