D+ 22:  I’ve always tried to write this blog through a ‘half full’ perspective; no-one wants to read a ‘woe is me’ diarist.  But there are times when feeling ‘half empty’ would be telling it as it is and this week fits that bill nicely.  As noted last time, Fabian’s WBC has started to rise and we think engraftment is not too far off, especially as he is now 22 days post transplant.  Other than that, his health has not been good and it is thoroughly soul-destroying to see him struggling with the raft of side effects on a constant basis.  A recent complication has been a chest infection which may or may not be viral but which they are attacking with an armoury of antibiotics.  This toxic onslaught caused his kidney function to deteriorate so they have had to pull back the dosage to allow this to recover.  The mucositis, itching, vomiting, diarrhoea and lethargy all persist and Fabian expelled his NG tube a few days ago (again) so lack of nutrition is back on the agenda.  He is understandably a lot grumpier these days and visits are not exactly a pleasant exchange of well-wishing!  We’re both still immensely proud of his resilience and fortitude and these qualities will help him overcome much in later life.  Other family issues are not helping to make life a bed of roses at present but I’d like to end on a half full thought, reminding myself that ‘He who is in us is greater than he who is in the world’.  Join me next time for better news!

D+16: When Elijah saw a cloud the size of a man’s fist in the distance, it was the first sign of the downpour to come. So it is for Fabian, as a flicker in his counts yesterday indicated the presence of fledgling white blood cells and a rise in neutrophils. Cells have grown! This was rather short-lived as it has fallen back again to zero but nevertheless the doctors who “aren’t promising anything” say it looks positive. He’s continuing to struggle with frequent vomiting, mild temperatures and general lethargy. Today he needed yet another platelet transfusion as well as red blood. One wonders how the body can accommodate such increases in fluids. He recently told me his wish was “to be myself again” which everyone, I know, will be hoping for him. Lydia has gone home for a couple of days to recharge and will no doubt miss the cleanliness and order of Room 9! Her 24/7 dedication to caring for Fabian is unstinting.
It’s half term and the children are home, glad of the chance to lie-in especially on these cold mornings. We’re probably at the mid point of Fabian’s time in isolation. It’s felt like a time warp in which the world is passing by whilst we are in groundhog day. All downhill now..

D+12: No flicker of movement on the blood countometer.  In fact Fabian’s platelets fell to single figures requiring a further transfusion.  The mucositis has well and truly taken hold and necessitated intravenous morphine for pain relief which Fabian controls with a pulse button. He only needs this intermittently but perversely, morphine can exacerbate the side effects itself.  His thickening hair is in fact falling out again (ho hum) and is now a rather monk-like style.  Eating continues to be negligible therefore the nasogastric tube remains in regular use, so with all the various fluid connections, Fabian is limited to a six foot radius of movement.  He has been continuing his learning with the teaching staff and is very proud of his work.  We’ve tried skyping his class during lessons but this proved more of a welcome distraction to the other pupils!  He enjoys visits from his brother and sisters, even if this is limited to gesturing through the glass.  Despite his obvious medical condition, the doctors seem very pleased with his progress so I guess it’s a question of perspective – and they have seen far worse cases than him at this stage.  So we do believe the prayer surrounding Fabian is sustaining and protecting him from more acute reactions.  A date for your diary – March 2nd will be his 10th birthday and it would be truly wonderful to have everyone home for that occasion.  Let’s believe for it!

D+7: one week today since transplant. Not much of interest to report whilst we await engraftment; rather like watching paint dry.  The first tell-tale signs of GvHD have appeared; mucositis, diarrhoea and skin rash. This is exactly as predicted and is actually a good sign (not if you ask Fabian!).  As they say in post transplant circles, ‘a little bit of GvHD does you good’.  The frustrating effect of this is complete loss of appetite and as a result he had to endure (again) the ignominy of a nasal gastric tube inserted so that nutrition can be supplied on demand.  Whilst on the positive side, at least his hair continues to grow back.  Each day we get the blood counts – and each day its zero.  So remember the chant – ‘grow cells grow’.  Isolation is very boring.  There are only so many lego permutations one can build.  The photo below illustrates Fabian’s latest construction.  I caught an item on ITV’s Daybreak this week which featured a little boy who has come through bone marrow transplant, thanks only to a last minute donor being found on the Anthony Nolan bank following an appeal on the programme last year.  We are ever grateful that our circumstances were so much more straightforward.  We were also reminded by a catholic friend that the day of his transplant was in fact the feast of St Fabian, a first century Pope.  Totally unplanned of course, but maybe a spiritual sign, none the less?

So transplant day arrived!  Somewhat of an anti-climax given that the procedure is in effect merely a mega blood transfusion.  I still wonder how they can squeeze an additional pint of blood into a  child’s body, albeit Fabian looked very rosy-cheeked afterward, whereas poor Cassia looks very peaky.  She though, was well enough to come home today, armed with 3 months supply of iron supplement.  At last then, with the start of a brand new immune system, we can say for certainty our 6 year battle against leukaemia has turned the corner and that in the great words of Churchill spoken in 1942,  “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning” (pardon the melodramatic).  The key weapon Fabian now has is the Graft vs Leukaemia effect (GvL) meaning that his new lymphocytes are locked and loaded, set to attack and destroy any remaining leukaemic cells.  Of course, there is a long uncertain road ahead and first to face will be the small matter of engraftment.  We need the new stem cells to engraft in Fabian and the first sign of this will be an increase in his WBC count.  The magic number 0.5 will indicate this has happened so everyone repeat after me; ‘Grow cells grow’.  I know this works because a 4 year old leukaemia child in America tried this on followers of his blog and he raced to engraftment.  Tonight the room is properly sealed up to ward off infection and Lydia will hunker down with Fabian, regularly peered at by staff through the door slats.  More news anon.

We’re now well past the halfway mark for transplant conditioning.  Six down, two TBI sessions to go.  There was a brief hiatus at this afternoon’s session when the accelerator broke down and Fabian was left in limbo whilst they hastily transferred everything over to the back up unit.  The initial novelty of this treatment has well and truly worn off and coupled with the increasing fatigue it causes, he is now very reluctant to head off to radiography when the nurse calls.  His white blood count is already down to 0.2 thus nearing zero immunity, so the zapping is doing its work.  Cassia is now admitted so Fabian will be cheered up by having his sister’s company.  Meanwhile, she is rather concerned about what to wear for tomorrow’s op; next, next she’ll be wanting to go into hair and make-up (in jest)!  Obviously, as we draw near to day zero there is little else on our minds, so if there’s a global catastrophe in the meantime, could someone post a comment in case we miss it?  Or just leave a comment anyway, especially our international followers. We appreciate you.

Ask Fabian whether he still needs a bone marrow transplant and he’ll point to the fact that his hair is growing back so he must be better.  And he has been extremely well of late, great appetite, loads of energy and even a spate of heavy night sweats had completely stopped after praying against this symptom.  We know too, he is still in full remission following test results from the bone marrow aspirate last week.  So it’s with a strange reluctance that he and Lydia must return today to the Marsden to commence conditioning treatment for the planned procedure next Friday.  We constantly remind ourselves of the ‘miracle’ that he has the choice of 2 sibling donors which is to us a sign of God’s abundance in his healing, giving him a choice of 100% matches when so many families struggle to find even one.  For sure, it’s going to be hard watching the radiation treatment and the hugely toxic cyclophosphamide infusions start the day after tomorrow and I only hope we can show the same mental toughness that Fabian has.  Cassia is all set to play her crucial part, although all encouragement to make her eat more iron-boosting greens has failed!  I’ll update more frequently now that things are rolling so do remember to subscribe to the (new) post alert via the link below the visitor map. God bless you all, onwards and upwards.