Remission – how sweet the sound!

So, a week on already since his discharge.  Life seems a lot busier when we’re all at home. No that it’s entirely a bed of roses for Fabian.  He’s had a nasty bout of mouth ulcers and cracked lips.  If you’ve ever had a mild ulcer, you know how painful they can be and bonjela offered him less relief than drinking copious amounts of Coke which seemed to numb the pain until we got a proper prescription.  As with all these side effects, they come and go and we have found yet another type of pain relief.  But the good, nay great news this week has been the lab result of his MRD which is negative.  This confirms he is in total remission (no more than one in a million leukaemic cells!) and will be spared the additional heavy chemo block that would have also postponed transplant.  But equally, it raises the question for us as to whether chemo alone could still provide a cure?  We had never expected to be heading to transplant as Fabian was classified a late relapse and the normal protocol for this scenario would preclude a transplant.  And yet following the relapse he unfortunately did not go into remission ‘as quickly’ as he should have, hence the doctor’s belief that only transplant can cure his leukaemia.  However, the earlier MRD samples, as our readers may recall, were poor (based on a trephine, not marrow) and perhaps not a totally reliable source on which to base such a profound decision.  As the time for transplant consent draws close, we therefore feel an awesome responsibility to choose the right path for Fabian.  Our fact-finding and research to help us in this has been extensive and we are grateful to friends who have assisted us in this.  Today we met the radiographer, a disarming man with a dry wit who gave a forthright presentation of the horrendous potential side effects the use of total body irradiation (TBI) might have.  Not for the faint-hearted, or indeed the stout-hearted.  There were many we had not fully contemplated; secondary malignancies, impaired lung function, loss of endocrine control, vascular problems, cataracts, cognitive impairment, pneumonitis, spleen infection and these in addition to infertility.  Signing the consent for TBI afterward was akin to agreeing to send your son to Chernobyl.  Again, there is an alternative, more widely used in the States – busulphan (a chemo drug) instead of TBI.  But the message was clear; TBI is best.  Fabian will now go for a full body CT scan on Monday as a precursor to TBI and the countdown to the so-called ‘Day Zero’ has begun.  There was a happy moment for Fabian on the way home as he was able to pop into his school briefly and see old chums.  They really miss him and he knows he is very much loved by those in the school community.  To keep the connection, we’ve had fun experimenting with skype to create a virtual link with his class. although nothing can quite replace face to face.  So with Christmas in hospital a certainty, Fabian’s been asking for a Christmas tree so we’ve decided to decorate early and create a festive environment before he has to leave.  Those of you praying, please ask for wisdom for us. Our thanks and love.