“For we know in part, then we shall know fully” (1 Cor 13:12).  These words of St Paul seem to capture our own state of mind concerning the return of Fabian’s leukaemia.  We know that initially chemo and now a bone marrow transplant have failed to eradicate this aggressive disease, and this in spite of his event-free and sustained health after both first and second remission. So we face this once more and to quote a line, ‘this time it’s serious’.  Our consultants are of the opinion that Fabian deserves, and has every hope of a cure, via a second stem cell transplant (SCT).  This is a wonderful lifleline for which we thank God.  All the more so as we know we have our reserve sibling donor, Oleander, ready and waiting to offer Fabian this gift.  This is the strategy but much needs to be finalised beforehand and an unrelated 10/10 matched donor is also an option if that would provide a better combination of engraftment, GvHD and GvL.  Fabian will first undergo an intense block of chemo to get him into remission – a prerequisite for SCT – and this begins on Monday.  He has spent the last 2 weeks grumpily complaining about the hospital, the food, us and anyone that dares approach!  This is so understandable as we gradually explain to him what he must go through.  Fabian has tremendous perception and emotional insight for one so young, often bringing us to tears with his heartfelt remarks; ‘Mummy, my body is broken isn’t it?’, ‘Without Oli here it’s like a piece of my heart is missing’ and ‘If I don’t feel any pain why can’t I go home?”.  He is equally stoic and this quality will serve him well during the difficult days ahead as we have been warned that the risk of complication or infection is much higher, often proving more dangerous than the disease itself.  Meanwhile, we have been offered a brief period of respite as Fabian has been allowed home for the weekend to recharge his spirit ready for the prolonged stay in hospital.  He has always been asking to stay in the Legoland Hotel so that is what we are going to do!  Fortuitously, Oli comes home from Uni today so we shall all be together to enjoy the moment. It will be precious.

I had thought that my last post was to have been my LAST post. Sadly not.
Since that time, Fabian had been enjoying a near normal life, free of infection and being well in himself. Regular School attendance was not yet possible though he had settled into a routine of home education supplemented by some wonderful tutors. On January 28th we celebrated the anniversary of his transplant which was highlighted by having a double page spread in Hello magazine who had been keen to do a follow up to Fabian’s ‘royal encounter’ story. The year milestone gave us all a psychological lift as by now it was evident that the transplant had totally engrafted and he had passed the high risk point of relapse.
But the cruel nature of this disease was to prove otherwise. Around this time Fabian started feeling pains in his back and stomach and began to lose both his energy and appetite. His blood counts seemed fine, albeit with some signs of infection, but the medics appeared none too worried. The symptoms, however, worsened and he began to have excruciating abdomen pains for which proprietary painkillers were ineffective. We bravely went ahead with a home party on his 11th birthday, March 2nd and he enjoyed the company of friends and making lego sets. But by evening, Lydia was packed and ready to take him into Kingston Hospital where he was able to receive stronger painkillers. This was followed on Monday by an MRI and ultrasound scan – something that doctors should have undertaken much earlier, for it immediately determined the cause of pain was due to extensive enlargement of his lymph nodes. Yet once again, blood tests revealed no sign of blast cells so we were still optimistic that this was purely a viral infection such as EBV. Kingston transferred us to the Marsden the next day and we found ourselves back in all too familiar surroundings, a place full of emotional memories for us.
It was decided to carry out a bone marrow aspirate as this would confirm or otherwise the root cause of the lymph swelling. I signed the standard consent form for the operation, one that Fabian had endured so many times before. Lydia remained living in while I was back at work and we awaited the outcome.
The waiting was short-lived. Our consultant met us yesterday to confirm in a resigned but matter of fact manner, that the bone marrow contained a high proportion of leukaemic cells. Fabian had been, in his words, ‘very unlucky’. I can’t say this scenario had not already been played in my head a hundred times but in truth, the reality of hearing it was like a hammer blow. It wasn’t unlucky; it was unfair. Massively.
So a new chapter begins with faith4fabian. As to our medical options I shall keep that for a later post. There is but one option – total healing in Jesus Name and Lydia and I would love to know at this time that many of you faithful followers of this blog will join in our prayer for this. “For he shall not die but live and proclaim what The Lord has done” Ps 118:17

I see from the site stats that there continues to be a steady stream of visitors despite no new entries for quite a while.  Today though marks a particular milestone in Fabian’s journey – the removal of his hickman line (intravenous catheter).  This vital line has served him well for 387 days providing pain-free, easy access for all his medication, blood samples and even nutrition but somewhat inhibited life for a boisterous 10 year old!  The removal procedure was quite straightforward and hopefully, for the last time, he underwent the normal general anaesthetic, joking with the medical team even as his eyelids drooped and then closed.  What this also signals is the doctors’ confidence in his post-transplant recovery and indeed his recent lumbar puncture confirmed that there were no blast (leukaemic) cells present so we can conservatively say that the transplant has been a total success in eradicating the disease (cue loud Amen!).  His hair has certainly grown back with a vengeance (actually, it’s a wig..).

Medication and monitoring will of course continue and we trust the residual side effects of his treatment will be minimal.  Our biggest concern going forward is Fabian’s educational development as he has effectively missed around 40% of  schooling since reaching compulsory school age.  For him, it is really a question of regaining confidence amongst his peers so perhaps a staged return to school from next term will build this.  His school have been very supportive throughout the whole process.  Other than that, he has remained predominately healthy and well and giving our rabbits and chickens regular exercise chasing them round the garden.  Having avidly watched the olympics, Fabian has now decided to become a boxer.  Now that would be testament to someone who could barely climb out of bed a few months ago!

In closing this blog, it’s been a pleasure and a privilege to share our journey with you and hopefully an inspiration to those who may face their own dark times ahead.  Thanks too for the great support along the way which has been so pivotal in helping us keep our faith4fabian.

God bless y’all

Darrell (Fabian’s sentimental dad)

Alas, a very forgettable week.  We have all been hit to varying degrees with the ‘flu and for the past 4 days remained holed up indoors recovering from this wretched virus.  Even our GP had to make a home visit – somewhat unheard of these days!  It had spread in typical domino fashion; first Oli, Ben and Cassia, then Lydia who predictably caught it having popped back to check on them, and finally myself.  I can only describe the effect of full blown flu as feeling like you’ve been steamrollered and then reversed over for good measure.  Thankfully we are all on the mend and no doubt a few pounds lighter.  The implication for Fabian is, of course, that no-one has been able to stay with him for most of the week which has been quite a blow for the poor chap.  A few friends have paid him some brief visits but nothing is quite like having Mum 24/7 as she has done these past 7 months.  Annoyingly, we are unable to skype him on demand due to the hospital WiFi timing out very few minutes so rely on him calling us back from the ward phone.  I can report though, that his temperatures appear to have stabilised and they have reduced or cessated most of his antibiotic medication so perhaps a release date is imminent?  Ironically, our home would be too infectious for him to come back to!  So, looking ahead to a better week, we have a couple of family events to celebrate; our wedding anniversary and Oli’s 18th.  Fabian’s homecoming would top that just nicely.  Today though, is Mothering Sunday and I would like to honour the total devotion and dedication that Lydia has shown as a mother this past year in the most challenging circumstances.

I expect one of your worst nightmares is to be stuck in a time-warp where the same day’s activities continually repeat themself, as depicted in the film of the above name.  So it has been for Fabian and Lydia this past week  as each day has brought the same cycle of spiking temperatures and fluctuating blood pressure – first up, then down, then up again.  The doctors follow a well-worn path of medication to deal with this but it is apparently quite normal at this stage post transplant for the body to react this way until the new immune system has taken hold.  Our ‘friend’ GvHD is back with its accompanying itchy all-over rash that is quite uncomfortable for Fabian, stuck in bed with not much to distract him (no space for Lego City now, sadly).  Having been moved from the isolation suite we are now back on the ward which has become so familiar over time.  I mentally noted that at some point or other, Fabian has spent time in every one of its beds.  So our  discharge from hospital remains on hold but each day is surely one step closer.  Tomorrow is the Great Marsden March when hundreds will walk the 14 miles between the two Marsden hospitals for charity.  Having had both my wife and son treated by them, I can honestly say they are institutions worthy of support.  I’ll be taking part in a similar type event myself next month so if you are able, do sponsor me via http//www.justgiving.com/darrellbate.  Thanks for reading!

D+24:  I ended my last entry promising to bring better news next time and for once my expectations have been surpassed.  Fabian’s blood counts have leapt massively in the past 48 hours and today, for the first time since transplant, they lifted the isolation restrictions and ‘opened’ the door.  So to quote Braveheart, “FREEDOM!”.  But 4 weeks in room 9 has so conditioned Fabian to live with captivity he was reluctant to step outside and even felt rather down about the possibility.  I’m sure this will pass.  So was this sudden change in fortune a miracle I hear the prayer warriors ask?  Well, not exactly.. For the past few days he has been on Granulocyte Colony Stimulating Factor, known as GCSF.  This is often given where engraftment is slow and is rather like jump-starting a car whose battery is too flat to start itself.  The GCSF stimulates stem cell production and in Fabian’s case it has certainly done the trick.  The commensurate rise in neutrophils has also helped clear the infection and bring down his temperatures and some of his energy has returned, enough to resume construction of lego project that had been shelved.  He’s even started to eat small amounts of solids and managed to hold it down.  Such a different Fabian from the one a few short days ago; we’re truly thankful to God.  It’s likely his counts will fall back slightly once they stop the GCSF and they need to see them remain for at least 3 consecutive days above the threshold before declaring he has properly engrafted.  The flipside of engrafting is an increase in GvHD which in Fabian’s case is a nasty rash so he’s now on steroids which will combat that side effect.

Now what was that about feeling half empty?