Check this out – our consultant has told us an awesome statistic; he said one modified T-Cell could destroy a thousand leukaemic cells! This immediately reminded me of that old testament scripture ‘one of you shall rout a thousand, because the Lord your God fights for you’ (Josh 23:10). This was spoken by God to Joshua on how he was to possess the promised land and rid it of his enemies and I believe is surely a prophetic statement that speaks to Fabian’s cellular-battle within. Promised land equals health and wholeness – enemies equal cancer cells. I’m sure this prompting was an encouragement from God because at the same time the consultant despondently informed us that the latest MRD, taken just pre-treatment has confirmed an increase in disease at the molecular level to one in 10,000, broadly equating to a billion leukaemic cells and growing. So friends, the battle we now know, is very real and pressing. Every one of those precious 52 million fighter cells needs to achieve its potential and destroy AT LEAST a thousand blast cells. Thankfully, the T cells should grow and even out the odds. At the moment it feels like Spartans v Persians.
Now here is my crazy Dad idea… I ask each one of you faithful followers of faith4fabian to sponsor one T cell in prayer to do its job. A cool way to show your support is by ‘liking’ the dedicated facebook page that I’ve created for this purpose. If we reach one thousand likes, we rout a million cells – simples! I’d like to aim even higher and with similar page promotions I’ve seen going viral, anything is possible. When Fabian sees that total rise each day he will be massively encouraged. Ok everyone, start trending…
It’s official. Fabian is now the recipient of genetically-modified T cells (lymphocytes) in this cutting-edge clinical trial that we believe will cure him of leukaemia. But what an anti-climax! On T Day itself he first underwent a standard bone marrow aspirate to determine his pre-treatment level (we still await results). Then the cells arrived amid a flurry of activity with nurses and doctors all checking and double-checking that Fabian was indeed Fabian and they that they had in fact got the right test tubes. Just prior to this, our consultant, a rather eminent professor of haemotology, had given Fabian a final check over and pronounced him ‘looking better than I have ever seen him’. He then wished us luck and I thanked him, unable to hold back a brief upsurge of emotion in my gratitude for his ground-breaking work. There was just 5ml of modified cells – 52 million of them to be precise. How could that seemingly small amount of innocuous fluid be a life-saver for our son? They had actually hoped to generate more but Cassia’s original blood donation had not produced sufficient T cells. This ought not to matter as once inside Fabian they will multiply rapidly. The infusion itself was a few short minutes, all captured on film by the ITV crew who were clearly not going to miss the moment. Fabian is a reluctant star, unaware of his starring role in being one of the first children to undergo immunotherapy. You will no doubt enjoy his understated performance when the film is finally aired.
After it was over we were given the empty vials as mementos and calmed down with a cup of tea (the ultimate medication). Fabian though was subject to round the clock observation in case of unexpected side effects. The similar trial in the U.S. had caused a number of patients to require ICU following their infused cells but much has been learnt from that experience. Nevertheless, doctors were cautious but yet there was no adverse reaction and just 24 hours later Lydia was able to take him outside to play on the swings! He continues to do well and should be discharged early next week. Monthly BMAs will be used to determine the return or not of the disease so we will have a rather nervous wait for results each time. Cancer sufferers will recognise this wait and see existence as the so-called ‘sword of Damocles’. But our hope is in the Lord and in Him we trust (constant note to self). Thanks to all of you for standing with us!
So I’m writing this entry from an all too familiar setting; Fox ward at Great Ormond Street. Yes, we’re back here for the final treatment phase, somewhat overdue but timely nonetheless. Fabian’s most recent bone marrow aspirate indicated a very small but measurable amount of residual disease. Despite this unwelcome news, he is otherwise in a very good state to receive the modified T cells next week. For example Fabian has sufficient EBV, a naturally occurring virus, with which to ‘trigger’ the T cells into attack mode -an absolute pre-requisite for them to take on the leukaemia cells too and ensure they remain long term in his immune system. It’s clear the bone marrow transplants haven’t been totally effective in eradicating this disease so we are left with all hope resting on the modified cells to do the job once and for all.
Before that, Fabian has to undergo a short chemo protocol to ‘dampen’ his immunity in readiness for the T cells. We’re not expecting any side effects from this dose and we know the routine well by now. Do pray that he tolerates the chemo.
The film crew has been ever present recently, capturing random activities at home and in hospital for the forthcoming documentary. We’ve been lent a video camera with which to record events when they’re not around – I call it the Fabcam. Not that there’s much to film whilst stuck on the ward whiling away the time. I’ll update again post T day.
Yes, it’s been a while. But be assured if there were developments to report – both good and bad – faith4fabian readers would be the first to hear. So there haven’t been. And that of course is a good development in that Fabian has been doing just fine since his homecoming just over 5 weeks ago. Cell by cell his immunity is rebuilding itself and the all-important white cell count is rising. It’s not all plain sailing and his blood count tracker over time resembles the ftse 100, steady growth over time but many hi’s and lo’s. This means regular transfusions, particularly of platelets, the all-important anti-clotting agent. He is actually allergic to them and nonchalantly reminds the nurses of this on each occasion as if they should all know by now (a simple anti-histamine dose overcomes the allergy). There’s also been the odd infection or raised CRP marker (irregular kidney function) which have meant a couple of stays at our local hosp. but this is all small fry compared to what many others experience post-transplant and as ever we are grateful to God for His continuing grace for Fabian. The date for the T cell infusion has drifted back to early November but there are no concerns, only impatience! We are one of a handful of families being filmed as part of a documentary following the development and progress of the new immunotherapy treatment. It’ll remain under wraps until there are some actual results to shout about and naturally we want Fabian to be one of the first successful recipients of the treatment in which case I’ll be pushing for a red carpet premiere of the film in Leicester Square. Elsewhere, family life presents us with many challenges, some unforeseen, many unwanted, all of our lives having been impacted by this journey we share with Fabian. We couldn’t do it alone and neither were we meant to.
I cant’t believe I’ve waited nearly a week to report that Fabian was actually discharged! Perhaps it was because I half expected him to be re-admitted within a day or so, but nevertheless he and Lydia are back after 81 days on Fox ward and another chapter in our seven year journey of treatment ends. Of course, they weren’t going to let him go without an accompanying shed load of medication and paraphernalia, all of which has turned our kitchen into a nurse’s station. Preparing and administering these drugs together with taking obs and fluids through his PEG takes upwards of a couple of hours a day but it is certainly more preferable being at home with family than in the isolation unit. Community nurses come to the house weekly to take bloods and he’ll need to attend daycare clinic regularly at GOSH so it’s not like we are going to miss them! The meds will gradually reduce as his immunity strengthens and I’m pleased to say his most recent bone marrow check returned another negative result; so still in total remission, praise God.
One of Fabian’s first priorities was to purchase the remote controlled tank he had been saving for. He is so pleased to be home, just to be free to mess around not being connected up to a machine or being prodded and poked by medical staff every few hours. He was so observant,noticing every minor change in the house since he had been away. It made me realise how such small things had become significant for him having been away so long.
Fabian’s return also coincided with the start of a new school year and I can muse on the fact I now have a child in each sector of the education system; higher, further, secondary and primary. Fabian obviously isn’t able to return just yet and will resume his home education for the time being but its packed lunches and school runs for the others. Somehow it’s starting to feel more normal again.
Days become weeks and weeks become months.. Here we still are, another week on with no firm discharge date in place. In fact, following his spiked temperature last Sunday, Fabian took a turn for the worse as our old friend GvHD returned with its accompanying disruption to normal bodily functions. The skin rash, which is symptomatic of this post transplant reaction, is rather unpleasant so I thought I’d include a photo with this entry to illustrate the point! So back on steroids, immune-suppresants, GCSF etc. All clinical reasons to keep him in hospital. However, I can report that there have been signs of improvement and at least a treat for Fabian has been the doctor’s decision to allow him brief periods outside. Armed with his scooter, he has loved these brief forays into the nearby park, even though he catches attention with his bald head and mask. The temptation to jump on a bus and head for home is strong! But soon enough it’s medication time and back to Fox ward he goes. I’ll say a word about the nursing staff, since the press is currently projecting the NHS as full of disgruntled nurses, most of whom would leave given the chance. Our observation is otherwise and we find them always professional and committed. Each nurse relates very differently to Fabian but they all enjoy being his carer when their turn comes round.
In terms of the genetic treatment we have had a setback in that the lab have been unable to generate enough T cells from the original sample and now require Cassia to give further blood. This will delay the infusion into Fabian by a further 6 weeks 🙁 though we are assured by our consultant this will have no bearing on the overall outcome (bear in mind hardly anyone else has had this treatment!). I’m praying for more patience, but please God, hurry up.
It’s been a frustrating couple of weeks since I last wrote. The end has been in sight for days now but doctors have been reluctant to give the green light for Fabian’s discharge, so we remain on amber. He has stayed remarkably well during this time, with blood counts steadily rising and no infections or post-transplant complications. Well not exactly. Today he had been given special dispensation to go home for the day to join his grandad for his 80th birthday celebration. This was to be quite a family occasion and something he had been looking forward to, even if it meant coming back into hospital. Then the first obs this morning showed a temperature over 39C so the doctor’s rule applied – feeling rather like the untimely bad light stopping play decision of the umpires in the 5th test – that he could not go. A horrible blow which did nothing to lift his spirits. Still, by the wonders of Skype he was able to ‘join’ the celebrations nonetheless. So now we must await the result of blood cultures to determine the cause, whether bacterial or viral but I suspect it will subside in a day or so as has often been the case in the past. Spiking temperatures are normal routine following a BMT but one cannot be too careful.
So we approach the end of the 10th week here at GOSH and it has been a slog. The delay in Fabian engrafting has also put back the T cell infusion which is now scheduled for mid September but this has no bearing on the outcome of the trial. Despite adversity, we continue to thank God for his wellbeing.
In most of life’s situations, a negative result is generally bad. Not so for an MRD test. We’ve had Fabian’s result back and he is MRD negative which confirms there is now no detectable trace of leukaemia in his marrow – a clear answer to my prayer request last entry. This MRD is also a better result than the one 2 months ago, indicating that the disease has continued to respond to chemo and the transplant. This is more of a relief than a surprise and it keeps us on track for the T-cell infusion at the end of the month – the real cure. The two other children presently in the trial have sadly had their transplants fail and can therefore no longer continue with it so I guess all researchers’ eyes will now be on ‘fighting Fabian’. Confirmation also that he has fully engrafted and maintained the minimum neutrophil count long enough for doctors to downgrade his isolation restrictions from red to yellow (think DefCon rating). This was great news for Fabian who was immediately on the phone to tell us excitedly that he’s going to be free. Once they disconnected his meds he was out the room like a shot and into the corridor, accosting hapless passers by with tales of his captivity. It’s good to see him so cheered up, even more so the next day when Ben and Cassia visited and were able to hug their brother for the first time in over 6 weeks (Cassia took a dozen snaps to record the occasion!). All that remains is for him to be self-sustaining in food and fluids and to this end we are likely to agree for a ‘PEG’ to be inserted in his stomach. This is rather like a valve through which he can be fed and is an alternative to the naso-gastric tube which he so hates. The GvHD has also receded though he’ll remain on steroids for awhile to combat the continuing temps.
On a less sanguine note, I well remember the same scenario 18 months ago following the first transplant when hopes were high. We are not kidding ourselves that we are out of the woods by any means but we do rejoice with you who also rejoice for each step he makes towards being cancer-free.
Five weeks post transplant and I guess many of you are wondering about engraftment. Well so am I, hence the silence hitherto. I can, though, now report that Fabian’s blood count hit the all-important 2.0 WBC level but promptly dropped back once they reduced his GCSF dose which is given to artificially boost the WBC. Remember the chant – ‘Grow cells grow’. No-one on staff is particularly worried as he has been doing really well clinically and they are not counting the days, as we do. One sure sign that the new stem cells are engrafting is the recent onset of GvHD which in Fabian’s case means he has a nasty all-over itchy skin rash. He looks a sorry sight in the buff but there is a lot in the medical armoury to relieve the discomfort, mainly steroid creams and we are hoping the rash will dissipate in due course. Today was bone marrow aspirate day and we’ll know by Friday whether his MRD has remained negligible meaning no further development of leukaemia since the last round of chemo. Please pray for an MRD negative reading!
Life in room 6 continues into the 7th week for Lydia and Fabian. I am surprised they have not been etching the days into the wall, as prisoners do. Other families have come and gone, not all with positive outcomes sadly. The parents room is a place where hopes and fears are shared and one cannot help feeling a tinge of guilt if ones’ own child is doing better than another. The isolation restrictions are continuing but are somewhat ‘relaxed’ at the weekend when a certain Sister is not on duty! For example, visitors can sneak onto the ward and view loved ones through the glass and talk to them via intercom. Cassia did this and she and Fabian placed their hands together through the glass à la Kirk-Spock movie style. We’re hoping for a release date in the next couple of weeks subject to many variables most of which we cannot predict or control. And that reminds me about Jesus’ words not to worry about tomorrow (Matt 6:34).
Watching warm summer days pass by from the confines of his room is no fun for Fabian. It’s tough to seem to see him on my visits feeling down and not being able to fix that – my attempts at humour are not even funny. He is the bravest boy to endure this but the continuing hospitalisation inevitably takes its toll on his wellbeing. We did enjoy watching the Wimbledon final together, good object lesson in winning against adversity.
With each passing day we await signs of engraftment, which at D+14 could be imminent. Thankfully, he has stayed infection free with the occasional temperature spikes that are immediately dampened with a barrage of antibiotics. Eating and drinking is still something to hope for so all his nutrition and fluids needs continue to be given intravenously. Last weekend we had the use of one of the hospital’s flats so managed some family time together in the heart of WC1 – one of the perks of having a long-term in patient! We also heard the sad news that a contemporary of Fabian’s at the Marsden, and someone who met the Royals with him in 2011, lost his long battle with acute myeloid leukaemia. He is, for sure, in a better pain-free place, but a tragic loss nonetheless.
If anyone has time to drop a line, I know Lydia and Fabian would love to receive any letters of encouragement by post. Just address to them: c/o Fox Ward, Great Ormond Street Hospital, London WC1N 1LE