Raining in my heart

“There’s a grief that can’t be spoken, there’s a pain that goes on and on”. The words from the melancholic song in Les Miserables are never more true for us than now. Its’s been a little over 4 months. On March 2nd we commemorated what would have been Fabian’s 13th birthday. Having already been blessed with three teenagers I wish with all my heart for Fabian to have been my fourth. His loss is truly devastating and profoundly sad for all those that knew him. I’m told that the basic instinct to live and get on helps get you through but then not to block the pain through overdoing it. Here at home, we are surrounded by physical reminders of his presence; toys, clothes, places he played. The many photos and videos we have of him are bitter sweet, evoking an aching sadness together with sweet memories. We’ve left his room much as he last left it, lego kits, hot wheels and an array of his baseball caps all still in their place. It is a sanctuary where I feel close to Fabian, both there and at his raised vegetable garden that brought so him much delight in his final months. The huge marrow that was his pride and joy amazingly still lies there, recognisable but gradually rotting. When it finally decomposes, another tangible connection with Fabian will have gone and only the precious photo we have of him holding it will remain.

So having commenced this lifelong journey of grief, what have I learnt so far? As a Christian who believes God can and does heal, how has my faith been affected? I’m quick to recognise that this life experience is hardly unique and many, many others have travelled the same road and written more eloquently than I ever could about child bereavement. A good example being the best seller ‘When bad things happen to good people’ (note the title states “when” not ‘if’) which certainly challenges the usual Christian response to suffering. The fact is, for more than 8 years many prayers for Fabians’ healing were said in good faith. And yet he did not live. We certainly accept Gods sovereign will, but one could be forgiven for asking how the death of a child could be Gods’ will. That will be my first question when we meet. Yet we were right to continually pray for a cure, but could never assume God would reverse the spread of disease for our son when He does not intervene miraculously for many other ‘good’ and ‘righteous’ people fighting terminal cancer.

Despite the outcome, we felt Him with us every step of the way and this was evident through the love and support of those around us, for as someone has said, human beings are God’s language. So, the skilful doctor, dedicated nurse, comforting pastor, devoted friend and supportive family member were all daily answers to those prayers during Fabian’s journey. And you know our palliative care nurse shared what I felt was a profound truth just hours after Fabian passed as we sat together going through practicalities. She observed that in her work with the dying she sees many small miracles, but few big ones. I think this is what we sometimes undervalue, the small victories and breakthroughs of which there were many in Fabian’s life despite him not getting ‘the big one’. Don’t get me wrong, I would selfishly exchange all of this just to have our son back, but as time passes maybe a bigger picture will emerge. For instance, I am starting to see that all of Fabian’s unlived years have transferred to us, his family, especially his three siblings who have their whole lives ahead with which to live out a legacy for their brother. Indeed, the three areas in which each of them individually excels – science, music and art, will I feel sure, be that little bit richer for the greater strength of character and purpose that the children now have. We see signs of this already; Oleander recently chose to research a technical aspect of leukaemia diagnosis for her dissertation. Ben has been inspired to compose music in his brothers memory; Cassia draws and paints exquisitively from the heart.

To other news, the long-awaited film featuring Fabian and two other children who underwent treatment at Great Ormond Street Hospital will be shown on ITV1 sometime in April. They’ve called it ‘Raining in my heart’ (though we’re not sure why!). Follow the Twitter feed at #raininginmyheart for further announcements. We’ve seen the final edit and feel truly blessed to have such a beautiful record in film of his last year with us (have the tissues to hand, though). We’re also moving forward with the Memorial Fund which will shortly receive charitable status. You can now donate via PayPal from the lego link on this site.

Let’s continue to remember Fabian as he remains in our hearts.

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Remembrance Day 2014 – our fighter goes home

I forgot to wear a poppy this year nor did I observe the minute silence at 11. I was too engrossed holding Fabian’s hand and gazing into his beautiful face as he lay peacefully dying in a hospital bed, his respiratory rate becoming slower by the hour.

Just 4 days before, he had been at home, weak but stable, enjoying visitors to the house. That week had begun with an unplanned trip to Legoland. It was the final day of their season and thankfully, one last chance for him to enjoy his favourite theme park. The next few days were spent in daycare having the usual reviews and blood products. Fabian agreed to having an NG tube fitted so that we could run overnight feeds. He had effectively stopped eating since the last sepsis in early October and as the gastrostomy had failed too, was slowly starving himself. This was a daily source of anguish for us, so having the tube back was a relief, short-lived as things turned out. Then we were telephoned on Friday to be told that a blood culture showed another gram negative infection was present. We immediately started oral antibiotics but within a few hours he had deteriorated to such an extent that we needed an ambulance ride to A&E where a team of nurses and doctors worked feverishly to stabilise the developing sepsis. Déjà vue, I thought, as Fabian lay there on oxygen support, heart racing, BP falling. At such times, the doctors take you aside to discuss ‘options’. The gravity of this situation was made clear. But being the fighter that he was, Fabian made it out of emergency and onto the ward and the immediate threat to life was over. However, this time his BP did not fully recover and this set in motion the consequential failure of his organs as they were gradually starved of oxygen. Alongside this, Fabian’s disease symptoms were rising fast, so inevitably he required a morphine pump to manage this. His agonising bony pain was thankfully subdued by this potent drug and he slipped into a semi-comatose state.
We had started to call friends and family to visit and many came. Fabian knew this and attempted to rally, giving us flickers of hope that the infection might yet be fought off. In truth, his kidneys had failed and fluid and toxins were steadily building inside, placing pressure on his heart and lungs. They attempted inserting a urine catheter, a most undignified procedure, but strangely only after they withdrew it did Fabian wee! He just continued to surprise. Then came a seizure. This was both unexpected and frightening, yet once again he pulled through with no immediate signs of neurological damage and continued communicating with small sounds and hand movements.
I guess any denial that we were at the so-called end of life stage finally left us once they stopped further transfusions. These were simply adding to the fluid build up and exacerbating that problem. I requested they keep up the antibiotics which they did more out of compassion than for any meaningful purpose. In any event, his PIC line then failed so we lost all intravenous access.
Now Fabian had been asking to go home and it became our focus to make this dying wish a reality. We also had the option of transferring to a nearby children’s hospice where practical support would be on hand. Time wasn’t on our side, though, and we were advised the very act of transferring him could be fatal. So we agreed to stay the Monday night and reassess things in the morning. That night was agonising. Our girls were with us as we cuddled round Fabian’s bedside, speaking loving words to him as he lay serenely, eyes closed, his breathing by now, alarmingly slow. Fluid in his lungs was making this quite laboured but he maintained this minute by minute. I glanced at my watch, noting it was past midnight and was now Remembrance Day. Would this be the day we would never forget? Somehow, we still kept praying for healing. Faith in extreme adversity is a powerful force and we knew God raised even from death as He did so through Jesus on earth. Well, we. didn’t witness a miracle that night, but by morning there was a noticeable improvement in Fabian’s breathing, enough for the decision to agree to discharge him and go home. There is considerable bureaucracy in such a situation and this delayed matters by vital hours, but by early afternoon Fabian was safely back where he had wanted. It was so very timely. His best friend had just arrived and was able to make one last piece of Lego and place this in his hand. Just a few short hours later Fabian drew his last, surrounded by our presence and love as we said goodbye to him on this earth.
He now lays at rest, surrounded by treasured items as we await his service of remembrance. It will be a fitting occasion to mark the passing of a unique little boy whose short life touched and impacted so many, from royalty downwards. A huge sinkhole, as it were, has opened in our family but we have the assured, bible-backed guarantee of meeting him again and in this, we take comfort for now.

So to the many thousands of followers of my family’s journey recorded through this blog, you have been a silent, continuos support to us, especially to Fabian knowing as he did that he was known and loved worldwide. I dedicate this site and it’s future development to his memory and pray that our story will be a resource to comfort, support and encourage any who must tragically face the terminal illness of a child. Please post a comment below that we can record these in a book of condolence.

“Friends, we want you to know the truth about those who have died, so that you will not be sad, as are those who have no hope.”
1 Thess 4:13

He will be missed, but always remembered.
Fabian Luke Sebastian Bate 02/03/02 to 11/11/14


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Pain and awe

Having pulled through life-threatening septicaemia, Fabian has had to endure a number of further complications in rapid succession. The worst of these has been his stoma which has caused no end of problems. Ironically, we agreed to have this inserted last year to provide a safer and more convenient method for his feeds and meds. Latterly though, the site became infected and opened up as a gaping wound, with stomach contents leaking out. The actual catheter ended up inside his stomach (a first for the doctors) and after an anxious few days we were relieved when it came out the other end fully intact! Apparently this incident is being written up in a medical journal. The ‘gunshot wound’, as Fabian calls it, needs a daily change of dressing but is stubbornly refusing to heal on account of his low white count. We can’t consider further treatment whilst this is the case so it’s a nasty case of chicken and egg.
Thankfully, he is now an outpatient although hospital trips for reviews and blood products are routine. The high disease level is causing Fabian more or less continuos pain. This manifests as an aching deep in his bones and by all accounts is worse than muscular pain which could otherwise be simply relieved by heat patches. Instead we are having to give morphine via slow or quick release methods. Witnessing your child in pain is frankly gut-wrenching. But the downside to morphine is the fatigue and nausea side effects which tend to knock him out for long periods. Still, our incredible son keeps picking himself up and showing the resilience of which we are so in awe. We’ve begun a regimen of supplements to help restore his metabolism and lack of a normal diet. It’s a shame the healthiest ones taste the worst but he has become resigned to taking them without too much coercion. The years of toxic treatment have debilitated his frail body and I can only wonder how we will ever rebuild him, but I will leave no stone unturned in researching the best natural products to help do this.
Despite the gloomy tone of this entry, I want to commend the tremendous answers to worldwide prayers that have lifted our spirits as we have seen Fabian exceed medical expectation. The bible tells us that faith the size of a mustard seed can move mountains, so God is not trying to make it difficult for us to believe! More anon.


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The longest night

I’ve learnt not to assume when I wake up that I have any idea or control over what unexpected event might happen that day.  In other words, to take nothing for granted.  Because when I went to work as normal last week, I had no idea that by the end of the day I would be holding my son as doctors fought to save his life.

So what happened? Fabian had returned home a few days before following another spell in hospital that resulted in having to remove his hickman line which had become infected.  For the first time in years he now required cannulas and blood tests using needles; not pleasant when he had been used to plug’n play intravenous lines.   He seemed well enough that morning but later spiked a temperature and was duly readmitted for another cycle of antibiotics.  Nothing unusual in that, except as they infused the first dose, Fabian went into septic shock and this sent his vital signs into orbit.  In just a few minutes, his heart rate hit 240, temperature reached 40.1 and there was no discernible blood pressure.  Coupled with this came a powerful attack of rigors – convulsive shaking as the body attempts to raise its temperature.  Doctors injected him with a series of water boluses in an attempt to resusitate his BP but with limited success.  He was put into the dependency unit, a sort of ICU-lite and hooked up to oxygen and a cluster of monitoring lines.  As the night wore on, his BP dropped further and on repeated occasions, doctors took us aside to decide whether they should transfer Fabian across to St George’s ICU.  It was clear they felt they had reached their own limits and that he would otherwise succumb within a few hours if not moved.  The ICU option itself was high risk as he might not have tolerated the powerful drugs they use, not to mention the journey across London.  Well, we agonised over this but ultimately decided he should remain put, believing that the many prayers being said around the world would carry him through.  One deep concern was that our eldest daughter, Oli, was 300 miles away at Uni, so we had to make a difficult call and ask her to catch the first available train back and she willingly did so, much to Fabian’s delight.  The rest of the night seemed interminable.  We dozed next to him, keeping a half-closed eye on the monitors for signs of his BP stabilising.  I can’t recall the exact time when I heard the nurse say; ‘It’s risen slightly’, but from that moment we knew he had turned the corner and with that came a huge sense of peace.  Fast forward to morning, and Fabian was sitting up asking for breakfast!  The doctors and nurses all took turns to pop in and were genuinely shocked but delighted at his rapid recovery.  Oli then turned up and might have wondered what the fuss had been about.  However, a further setback later that day was that his gastrostomy wound opened up and rather dramatically, poured forth a large amount of bile and blood .  The sight of it was very distressing and Fabian was in agony.  Although properly dressed now, it remains a real concern and he’s unable to eat or drink normally until the wound closes up.  The original infection is a lot more stubborn and of course, underlying the immediate issues is the disease itself which continues to wipe out any healthy white cells he has.  Our plans for blinatumamab (excellent word for scrabble) are therefore on hold, perhaps for good?  We had previously made the day trip to Sheffield to discuss this drug option with the team there and felt on balance, it offered a worthwhile attempt at getting back into remission. The odds are low, but better than none.

A few days before this incident we heard sadly that yet another Marsden boy known to us had lost his fight.  But by God’s mercy, we still have our Fabian because He numbers our days, not because his days are numbered.


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Infections, decisions and our big G

Torrid times for Fabian as he succumbs to more infections resulting in three hospital admissions in the past two weeks. This is a predictable outcome of him having close to zero white cells and completely zero neutrophils. Without this natural protection every bug or virus is a potential killer. These usually present with an all too familiar spike in temperature and we have to grab the overnight bag and head to our local (hospital, not bar). We had a serious scare when during one night Fabian’s heart rate dropped below 40 and his BP shot up. Thankfully, it stabilised over time but doctors were left scratching their heads as to what the cause was despite a raft of diagnostics such as ECG, X ray and CT scan. Most infections are linked to his intravenous lines and PEG (gastric tube). These are particularly hard to shift, and being in constant use for meds mean one simply exacerbates the problem. The local hospital is generally very good but they don’t deal with enough oncology related illnesses to anticipate the sort of complications Fabian presents. Our own knowledge of what to do is often key to making the right intervention but we were completely caught out recently whilst enjoying a restaurant meal. Fabian had been to wash hands and returned with a large damp patch on his shirt. We assumed he had splashed himself but subsequently discovered that the PEG had loosened and his stomach was leaking. Having to patch him up urgently in front of the other diners no doubt spoilt their appetites!
In terms of treatment, we’ve agreed by necessity to stop oral chemo and tick over on vincristine and steroids until his counts recover. That will reduce risk of infection but won’t necessarily stem the spread of disease. It’s a case of the lesser of two evils but if his marrow can recover, we can start to use immune boosting supplements that are anti-cancer agents too. We are also in the ‘valley of decision’ about whether to apply for further experimental therapy. I’m referring here to blinatumamab, a monoclonal antibody that is achieving remission within two weeks for at least one third of ALL patients who are using this drug. The flip side to this is potentially life-threatening side effects that kick in if the drug is working! The key attraction, though, is that it’s a new and different weapon to wield against Fabian’s subversive leukaemia and therefore stands a better chance of succeeding than simply repeating chemo. We need to be sure, though, that this is in the family’s best interest. All of us are affected by the ongoing disruption and emotional rollercoaster but then any parent reading this knows we are hard-wired never to give up the fight for a child and I’m reminded of a certain president who famously said; ‘if we do nothing, we run the risk of failure’.

Fabian remains sanguine throughout these ordeals and his good humour and charming wit make him a firm favourite with the medical staff. We continue to fit in the odd day trip or special event, most recently the concourse de elegance collection of famous cars at Hampton Court and a corporate activity centre where we all donned cams and took part in a ‘battlefield live’ laser fight. September is UK childhood cancer awareness month and the many stories publicised highlight just how many ordinary families like ours are fighting the big C. Before this all happened, I would never have paused to think about it, but now we’re on the inside looking out it’s been a revelation.
Please keep sending your prayers for Fabian upward; there’s a big G fighting for him.

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This sucks!

Time for a polite rant – this disease sucks. Whatever we have thrown at it, the thing reinvents itself and comes back stronger. Medically, they call it clonal evolution so whereas in the early days the leukaemia had ‘one cancerous head’ there are now many, a bit like the Hydra of Greek myth. I was reading Fabian’s most recent haematology report and it runs to 15 pages of lab analysis! And this is a fraction of what a complete genome sequence would generate. We are indeed ‘fearfully and wonderfully made’.
Well, the latest news is that Fabian came down last week with a serious infection that turned out to be an eColi. His blood counts are shot to pieces just now because of disease and chemo, hence his susceptibility to this commonly found bacterium. It has taken a while to stabilise him with antibiotics but he’s slowly winning the fight and the doctors acknowledge he is one tough cookie. Of course, being an in patient is so miserable for him and he has been rather down at times. My usual attempts to elicit a smile (like wearing a bedpan on my head) have lost their lustre but if his temperature holds steady we may get a few hours home leave this weekend.
So having now reached the limit of what conventional treatment can do, we have been looking into taking an integrative approach and possibly combining or replacing chemo with alternative therapies. There is no shortage of material on the Net in this regard, much of which has to be run through the ‘quackwatch’ filter. That said, God has clearly put healing properties in many herbs and plants and these have been around long before allopathic medicine and the pharmaceuticals. Interestingly, one evidence-based agent is the highly toxic oleander plant, known as Anvirzel in drug form. We also like it because it bears the same name as our eldest! Equally, there are more biological therapies coming onstream which are antibody targeted treatments but probably no more effective than ‘good’ old chemo. We certainly would not put Fabian through any more hospitalisation without far greater certainty of a good outcome.
During the sunny days we managed to fit in some enjoyable events including CarFest, Lego Show, BBC Good Food Show and a helicopter flight. Fabian’s vegetable garden abounds and he has produced what must be the the largest courgette I have ever seen. The chickens and rabbits bore offspring and our apple tree has gone bananas (with apples).
I am not going to say anything other than that we are in a difficult place, but never alone. His rod and staff, they comfort us (Ps 23) and His promises are yes and amen.


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Change of course

Since I began this blog three years ago, I have always held to the notion that a half full attitude is better than a half empty one.  Not just an empty sentiment – the book of Proverbs warns us that ‘that which I fear shall come upon me’.  I knew too, though, that there would likely be entries when it would be hard to be positive and this is certainly one of those.

It had been looking uncertain last time as everyone suspected the treatment was failing because the disease level had increased, though we were hoping some of the T cells still remained.  Sadly, though, it was confirmed by the latest bone marrow check that there has been a further rise in blast cells (visible now at cellular level) and that no T cells are detectable.  Naturally, we and the medical team are perplexed and hugely disappointed, especially given Fabian’s positive – albeit transient- response to the previous batch of T cells.  No one can say for sure why this time round has failed.  It may be that his own immune cells have since developed antibodies that destroyed the modified cells, or possibly that the leukemia has evolved into a different variant that isn’t identifiable by the T cell receptors.  This news now requires a change of course since there is no alternative treatment available that has curative intent, so we are left with disease control and symptom care as our only option.  Nowadays, this can be extremely effective in suppressing many cancers, although we never wanted to settle for disease management and have always fought to obtain whatever would offer Fabian the best hope of a cure.  In this respect, we were encouraged by our consultant who said we have been the best advocates for Fabian we could be (or isn’t that just being a parent?).  In the meantime, who knows what breakthroughs are just around the corner?  Already, the use of genome sequencing is leading to so-called personalised drugs that will one day render chemotherapy obsolete.  Immunotherapy too, is improving as more evidence, particularly from the U.S. studies, comes through.  I guess, though, if Fabian was writing this he would be shouting ‘no more drugs and hospital stays!’ and that is something we must respect.  You reach a place where the equation says ‘quality of life>quantity of treatment’.

We are now into the vacation period (or staycation in our case) but Fabian’s has already been interrupted by 5 days in our local hospital because of (another) infection.  At least the en suite facility and room service was excellent.  During this time, he had to attend a daycare appointment at Great Ormond Street so they sent him by ambulance with full blues and twos.  The usual 90 minute journey took just 30!  However, we hope to fit in more exciting day trips if this period of glorious weather persists.  My closing thought is to remember the occasion recorded in Luke 8 of Jesus healing Jairus’ daughter, a child the same age as Fabian.  When He was delayed and the girl died, they said to Him ‘why bother the teacher anymore?”.  But He merely told them not to fear and went on to raise her to life.  I like that.  Jesus always has the last word regardless of our human understanding.  And He never minds being bothered.  Have great holidays!


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Down but not out

Regular followers will note I have been offline for the entire duration of the World Cup.  This is pure coincidence, I assure you, as had there been news to tell that would have been my first priority (the fact that the tournament was totally absorbing probably distracted me nonetheless).

I know many of you will have been keeping those T for tank cells in your prayers and it has been a constant burden on our minds as we awaited the BMA that would give us the first results.  From a symptom point of view, Fabian has been perfectly fine with no indication of the immune battle taking place within, which ironically was what we wanted to see.  For instance, the EBV vaccine that was injected ought to have caused a rash to show the fightback – but there was nothing.  No sign either of any ‘cytokine storm’ that has been the hallmark in the U.S. trials.  Just regular trips to our local for platelet and Hb infusions (but by no means minor inconveniences!).  But now he has had the BMA together with more vaccine and the result we received was totally deflating – there had been no reduction of leukaemia but in fact a near doubling of the MRD level, though it’s still well below frank relapse.  The principal consultant is on annual leave so we have yet to unpack the why’s and wherefore’s of this unexpected outcome but my guess is that it will provide little solace as the headline figure suggests that the treatment has possibly failed because at the same point first time around there had been a measurable disease reduction.   This is disappointing for all future beneficiaries too, as a breakthrough in this type of immunotherapy seems still to elude doctors.

We are certainly down but by no means out.  Where man’s works end, God’s begin!  In fact, the night following the result, a healing evangelist was coincidentally holding a meeting in our neighbourhood to which we took Fabian.  He nonchalantly sauntered up to receive prayer and returned declaring himself healed and saying ‘ we can go home now’.  This is the simple faith of a child that Jesus spoke of – unlike his anxious parents wondering will He heal or won’t He?   We hope to make time for special trips over the course of the summer, for instance we all enjoyed a day at Alton Towers courtesy of Rays of Sunshine.  I’m proud to say the girls and I rode the infamous ‘Smiler’ and memories of our trip to Disneyland came flooding back – literally – when all got soaked on the flume ride.  Fabian’s new raised garden has exploded with life with the sunshine and rain and he loves tending it.  It’s a well-known cliche′, but each day is a gift.


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Tanks and thanks

Well, after all the hype, our T Day came and went in underwhelming fashion.  The build up to this, Fabian’s second round of immunotherapy, has seemed hugely drawn out so we did not approach today with the same alacrity as on the previous occasion.  It is also sobering to know that this was possibly the last treatment for leukaemia he will ever receive, though not a feeling shared by Fabian who would be elated.  The day began with a standard bone marrow aspirate that will provide a baseline level going into the therapy.   Fabian’s stock phrase just before ‘going under’ is “see you on the other side” which of course, has a rather different connotation to what he actually means!  He recovered well and the cells arrived shortly after lunch accompanied by a small army of nurses and doctors.  There was a fear that he might experience a cytokine reaction from the cells and that this would be life-threatening.  Since there is no identical precedent to this procedure, one could say the doctors were playing it uber-safe.  Vials of hydrocortisone and adrenalin were to hand if a reaction had occurred – the use of which would have rendered the T cells useless and that would be that.  Thankfully, this was not the case and within minutes of the infusion Fabian was back to his lego build from which he had been so rudely interrupted by this procedure, cancer-curing though it may be.  There will be a further top up tomorrow and then we wait and see.  The EBV virus was administered earlier in the week and it is this that should activate the T cells to multiply and continue to regenerate.  To help Fabian understand the process, he’s called them his tank cells which he visualises going through his blood blasting the bad cells to bits.  Cue battle of Kursk war clips and the analogy is complete, except that unlike those panzers, let’s hope his tank cells won’t run out of gas.

I’ll end this entry with another T; thanks.  Thanks to our medical team who have given us this unexpected possibility and thank you to God for making possible the unexpected.  Here is positive Fabian giving you all the thumbs up!



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Last stop

There are two big events coming up in my diary, coincidentally both on or around the same day.  One is the start of the World Cup – come on England! (odds are not looking good though) and the other date, more importantly, is Fabian’s T-Day – come on you chimeric antigen receptor T cells! (slightly longer odds at around one million to one).   I jest, of course, as the figures are misleading.  Those of you who recall my ‘one shall rout a thousand’ analogy last time, know that even a few million of these killer cells will destroy a billion or more leukaemic ones.  In my last post, I mentioned Fabian having had another aspirate to check disease level.  This turned out to be 25% lower than the previous reading (around 6 cells per thousand) so we are thankful he is still chemo sensitive.  It’s not quite where we wanted to be as it represents a high MRD level but we’ll take any positives.  He also continues to remain asymptomatic and in reasonable health although requiring regular platelet and Hb infusions.  His last was 500ml and took 5 hours to infuse!  Staring at the drip line for that long felt worse than watching paint dry.   We’ve now begun the individually-tailored protocol leading up to T day; this has meant a number of baseline tests and starting an intense chemo cocktail designed to deplete his lymphocyte count to ‘make space’ for the modified cells.  So it’s back to hospital later this week to stay up to, and for a short while after the big event.  It’s almost a year to the day since Fabian’s transplant so it will be a bitter sweet anniversary to be back in isolation on Fox ward.  By way of a send off, parents and pupils at his school had generously contributed to buy him a top of the range Lego kit, something that will give hours of pleasure to our master builder.

We’re probably facing the last stop in terms of treatment on this epic journey.  There will be no further therapy trials offered if this one fails.  One can only remain sanguine when reflecting on this, but the clinical facts can be downright depressing, if truth be told.  Yet the biblical example of Job is a huge aspiration to us.  On hearing the worst conceivable news, he never blamed God but instead, worshipped Him.  Albeit he argued with Him later on and I have to confess to having had a few moans myself, but we do continue to lean on God and the support of others.  Will update you all next week.

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