Well we are the right side of transplant, no longer ‘pre’ but ‘post’. However, what ought to have been a straightforward harvesting procedure for Cassia turned into something far more protracted as surgeons were unable to collect the required WB cells per ml and ended up having to take a far larger blood quantity than planned. This has left her feeling somewhat worse for wear and extremely fatigued after such a large loss of blood and two, rather one puncture wounds. She has been truly brave undergoing this procedure again and is having well-deserved r+r at home. The net result is that engraftment is now likely to take longer given the lower percentage of stem cells so inevitably this means longer isolation and continued risk of infection for Fabian (groan). At T+4 he is suffering the side effects of mucositis and constant pain for which he has morphine. A neat little hand-held controller rather like a TV remote allows him to regulate the dose as required. There are never less than 3 intravenous lines into him at any one time supplying nutrition, antibiotics and fluids. This makes manoeuvring round his cramped room even less practical. The NG feeding tube was duly thrown up and he is canny enough to charge us £10 to have it reinserted! All for the good cause of buying a remote control tank one day.
We had an unexpected letter postmarked St James Palace. It was from the Duke of Cambridge who wanted to wish Fabian well. I am impressed that William and Kate obviously follow his progress as they keep abreast of his current treatment and status. I’m sure they will make wonderful parents with all the consideration they show for children. Fabian says hi to all his global followers which now span every continent (see visitor map). Keep willing him on and for the new stem cells to start producing white cells. With British tennis players doing unusually well at Wimbledon, I’m feeling positive!
I’m here with Fabian on the eve of T-day, his transplant. It’s been a week since his admission and the unwelcome side effect of the pre-conditioning chemo has been to cause him the usual loss of appetite coupled with frequent bouts of diarrhoea and vomiting. Thankfully, he consented to having an NG tube inserted which will at least mean he gets the nutrition he needs. The unfamiliar staff and environment here at GOSH is taking Fabian some getting used to, but having Lydia with him provides him constant reassurance that all will be fine. Isolation is, of course, a tedious pain but a necessary one. At least there are 2 weeks of Wimbledon coverage ahead.. Cassia is here too, going through prelims ready for her big day tomorrow. She will spend the night in an adjacent ward as it’s an early start for the stem cell harvesting procedure. The transplant itself will take places a few hours later and as before, will seem like an anti climax after all the build up. Then all we can do is wait for the all important white blood count to rise, signifying engraftment. The REALLY important stage comes later in August when the modified T cells will be infused. I guess that will be another T day.
Our encouragement remains in the Lord. Psalm 147:3 “He renews our hopes and heals our bodies”
Ok, so no news is good news, right? Indeed, no major developments to report as we count down the days to admission. Fabian assiduously marks his calendar each day as that time approaches but it is hardly what any 11 year old boy would look forward to; weeks of confinement in probable isolation during what might even be a decent summer. He is a very reluctant transplant patient, stating with certainty that he does not require one now that he feels better. And we all wish that were true. He well remembers his first transplant in January 2012 and asks whether he will get sick and lose weight again – we hope not. At least he will be going in plumped up after the steroid effect boosted his appetite these last few weeks and he has been overdosing on cheese strings and pasta.
Now that we have transferred to Great Ormond Street for the procedure we have had to be inducted into the GOSH way of doing things. This is altogether more strict than the Marsden in terms of what is, and is not permissible on the ward. The risk of infection is the biggest concern and all manner of protocols are put in place to limit this. Not so long ago the the children were kept in ‘plastic bubbles’ so I’m glad things have moved on from that! Visiting is heavily restricted and limited to viewing through a window only so Skype is likely to become the communication tool of choice. Everyone is expecting that engraftment will be straightforward and quick, since Cassia of course is the same donor. She has had to undergo her own medical and psychological assessment during which her only concern was the possibility of waking up in the middle of sedation! She is very brave to do this all again and joins a very elite group of sibling double donors.
We’ve managed a few memorable events for Fabian; holding a BBQ for his choice of guests and a special meal for the family at Jamie Oliver’s Fifteen restaurant, driven there by stretch limo. We all enjoyed being photographed by tourists who assumed we were celebs, but to us of course, Fabian is.
Everyone is rooting for him as we go into this final phase of treatment and your prayers and best wishes for him mean everything.
Staying in remission is a full time job. And a very important one. As the days countdown to T-Day we know this aggressive disease could return at any time and jeopardise the outcome of Fabian’s planned transplant. Since achieving remission (but not disease free as determined by the MRD test) he has been on maintenance therapy as an outpatient and struggling to recover his blood counts which frustratingly seesaw like a rollercoaster. His bonemarrow remains desperately frail having been transplanted once and then hammered by the strongest dose of chemo permissible. But we were heartened by the latest MRD result which showed a 10 fold reduction in leukaemic cells from last time to a staggeringly low 2 cells per 100,000. And yet even at that level, left untreated the leukaemia would ultimately come back whether in weeks, months or years. They call this scenario the sword of Damocles. Readers may like to google for the full story!
So Fabian is trying to enjoy these days at home in between hospital trips and generally keeping well. He had a lovely day at the zoo and has been racing up and down on his new go-kart, a generous gift from the Shooting Star trust. Our chicks hatched against all odds and together with the baby bunnies (minus one deceased) they are a reminder to us of the wonder and fragility of new life. Your continued prayer is valued and Fabian knows he is in the hearts of many.
I’ve titled this entry after the name of this moving video which charts the story of a little girl in the States who underwent similar gene therapy to that which Fabian will receive and had an amazing outcome. It may seem over-dramatised, but the outcomes are true none the less. We really feel honoured to be selected for this groundbreaking trial here in the UK. It’s timely for me to share this, as most of today was spent at Great Ormond Street Hospital during which they collected the vital blood sample from Cassia that will be genetically treated ready for infusion into Fabian later in July. To see those test tubes with their precious contents being packaged up was both profound and yet mundane. The bureaucratic paperwork that followed was most certainly mundane but then there are a vast array of researchers and agencies whom we must consent to providing Fabian’s treatment data.
I’m also pleased to report that his blood count has bounced back remarkably well. Platelets and neutrophils have tripled in the past week – signs of his marrow getting back into full production. But now maintenance chemo has started up so we expect these will drop again 🙁 Nevertheless we have 3 or 4 weeks before his planned admission so hopefully some nice day trips in between Marsden daycare trips to enjoy. Other signs of new life at home are that our rabbits have produced a clutch of babies and mother hen is sitting on a dozen eggs so the household is feeling quite broody. And on that note I should end.
To those of who that pray for Fabian – and I know many do – I want to encourage you that your prayers offered in faith most certainly make a difference. Seeing him now, in remission and in such good health following the hammering chemo he received only weeks ago is testament to this. In fact until recently our consultant described him as ‘very frail’ yet he has bounced back beyond medical expectation. Yes, he had an infection which meant an unscheduled 5 day hospital stay and his neutrophil count remains low but his overall recovery has been rapid given the parlous state of his bone marrow. This augers well for preparing him for transplant as he will need to be in the best physical condition going into this most dangerous procedure. For that reason, the treatment plan is to keep Fabian on low level (maintenance) chemo for the time being rather than the high dose chlorfarabine that was originally planned. We need wisdom in this decision as the danger of relapse is ever present and would jeopardise the transplant route if that happened. Meanwhile, we know that 13 year old Cassia will once again be his donor from the point of view that introducing a different donor’s stem cells this time around could generate a graft vs graft reaction as there would be in effect 3 different immune systems all vying for supremacy. The gene therapy approach requires her to give a sizeable sample of blood beforehand that gets couriered to a lab in France, Nantes to be precise, where the T cells are genetically treated with a retrovirus for a 100 days and then returned ready for infusing into Fabian. This may be cutting edge research but actually seems like rather a crude process. The thought of this life-giving sample being lost in freight is unimaginable! I fancy a trip to collect it myself..
So we are hoping for an event-free May in preparation for the summer of discontent (as it were). It is also exam season and both Ben and Oli face their own trials in this respect. With all they have witnessed, I’m sure they will do well in Biology. Keep on keeping on.
Much to report since last. Fabian’s improving blood count following chemo resulted in him being allowed home late last Friday. Seven weeks hospital stay had certainly fuelled his eagerness to be back in his own room and thankfully, he approved of my redecoration. The weather picked the right time to improve and he was able to enjoy sunshine in the garden and heckling the chickens. Now as we have learnt, being discharged is actually a euphemism for ‘see you in daycare tomorrow’. This is usually because a whole host of medication continues and needs to be administered at hospital. So he was indeed back on Monday for prophylaxis drugs and blood tests; routine but time-consuming none the less. The next day though, he and sister Cassia enjoyed a special treat to have been invited to tour the film studios at Elstree. Here, they also met the special effects team who had arranged to create a mold of Fabian’s head and hands and produce these in rubber. Not sure what their use will be, but memorable none the less.
The following day proved to be both unpredictable and bizarre. It began with Fabian and I back in daycare whilst Lydia was at another hospital with Ben who needed urgent treatment for a knee injury. Fabian’s platelets were extremely low and he needed a transfusion but there wasn’t time as we had a not-to-be-missed appointment at Great Ormond Street Hospital to discuss the transplant trial that he is being considered for. The trip there and back took far longer than anticipated and it was early evening by the time we go back to the Marsden where he could finally have the transfusion and this made for a 12 hour day by the time we were all home. Shortly after though, we noticed heavy bleeding around his intravenous line. This wasn’t clotting due to his lack of platelets and was going to need more than an elastoplast. So, with blood-soaked Fabian, it was back in the car, this time to Kingston, our shared care hospital where he needed yet another transfusion and an overnight stay. Overall, an exhausting tour of 3 hospitals in one day.
We were hugely relieved to learn that the result of last week’s bone marrow aspirate confirmed no leukaemic cells present. This makes all the heavy chemo feel worth it – and I don’t mean L’Oreal! Thankfully then his disease can still be controlled by drugs alone but as has been evident, this is not a satisfactory solution. The new immunotherapy treatment now available is now our preferred option. We were excited to find out more about this trial and to learn it is truly at the cutting edge of blood cancer treatment internationally with only a handful of patients receiving this treatment to date. Early findings from the States are favourable, even making headline news with its results. Side effects from GvHD are greatly minimised although the overall impact of toxicity is still unclear. What feels so right about this new approach is that it essentially uses the power of the body’s own immune system – with a little T cell modification – to heal itself rather than using a drugs-based approach. And coupled with the potential benefit to improving treatments for future children, joining this research trial seems absolutely right. Our donor is yet to be confirmed but we will need to transfer to GOSH with a transplant date planned for early to mid June. Many visits needed before then and we will certainly get to know the route to WC1 intimately (if not the lack of parking!).
Still in his ‘week off’, Fabian is back in hospital, this time with an infection. He has become well-known on the oncology circuit and always gets a warm welcome from the medical staff, though always apologising for seeing him back again. This is a tiring journey which we could not complete without our Heavenly Father who gives strength to the weary. Onwards and upwards.
Well we are now into Day 44 of this incarceration, though I myself am not incarcerated – just in-car-se-ated since my weekly mileage has multiplied. Our wonderful Fabian is finally recovering his blood count (WBC 1.1) and up and about continuing that interminable road to recovery since the chemo block. He is now minus his hair and a few kilos in weight but nothing that won’t return in time (although his Kojak pate is nearly matched by brother Ben who actually chooses that style) Mum Lydia has been unstinting at the hospital during this time with occasional overnight relief provided by Oleander whilst she was back from Uni. The relentless march of infections seem to have been stemmed; the worst, a candida fungal infection, led to doctors having to remove his hickman line. This in itself necessitated transferring to St George’s for a couple of days. The frequent monitoring of Fabian’s organ and body functions is by now all too familiar; a legacy of the fact that each chemo drug causes unwanted side effects which manifest in every child to a greater or lesser extent. At this stage, after 6 and a half years on and off treatment, the cumulative impact could have been chronic problems but our brave fighter has shown such resilience in mind I’m sure his body will continue to follow suit.
We’re now awaiting the next bone marrow aspirate which will indicate whether we have achieved remission, but notwithstanding this, a second block of consolidation chemo is a near certainty, this time using super drug chlorfarabine (yay). In between this, Fabian may be given home leave which will be a huge boost for him, not least because I have redecorated his room to look like the hospital ward (, sorry, joke, it’s late at night). Meanwhile, it’s always a pleasure having friends to visit and we appreciate the effort that that requires – especially trying to get into the place once they arrive! We had another celebrity visitor drop in, Peter Andre, but Fabian wasn’t up for the photo opportunity (Mr Andre’s loss). The Marsden is a unique environment where an improbable mix of parents, patients and professionals form a tight-knit community, all focused on the single goal of getting discharged from the place. Global issues and threats of nuclear war are strangely distant and actually not very important whilst you are inside. Do keep us in your prayers amongst the many demands in your life, we hope as many as want will be a part of Fabian’s healing (James 5:15).
We’ve now settled into the familiar routine post chemo of daily temperature spikes, antibiotics and waiting for count recovery. It is a war of attrition. The lagged effect of the intensity of this block hit Fabian about 6 days after its completion in the form of neurological symptoms. His personality seemed to have been totally suppressed and for a while he responded to nothing and no-one. Concerned there may be a neural infection the doctors did an MRI and lumbar puncture but thankfully both confirmed this wasn’t the case. As anticipated, he has needed a nasal gastric tube inserted since weight loss has become a growing concern. This is something Fabian absolutely detests but it was able to done under general anaesthetic for the LP. Now, in the last 48 hours he is returning to normality and it is a small but joyeous thing just to see him take a few bites of food. Despite having a battery of chocolate eggs, this was the first Easter we have seen where our son has not devoured them in quick time!
With regards to the potential treatments we have since heard that funding has been approved for the chlorfarabine and a referral has been made for the immunotherapy trial though both of these will depend on the outcome of his next bone marrow aspirate in 2 weeks time. The extent and depth of research into treatment for leukaemia is phenomenal, often made possible by charitable donation alone as there is insufficient ‘return on investment’ for the drug giants to prioritise this. Drugs alone, though, will never cure a spiritual cause and we are seeking to understand what roots there may be that could have caused this disease so that these can be cut off once and for all.
Sitting in the Marsden next to Fabian whilst he sleeps soundly, a beneficial side effect of the intense chemo block he has just finished. Unfortunately, there are other less pleasant ones such as diarrhoea, sore eyes and loss of appetite which all blight him at present. The strength of the chemo reduced his blood counts to zero within a few days and it will take 2-3 weeks for this to recover sufficiently to be discharged. We expect, though he’ll need a second block to achieve remission and in anticipation of this the doctors have applied for funding to use a newer drug, chlorfarabine, that is not yet available on standard protocols. There is a hefty price tag for each cycle so we have to be hopeful that our local PCT is not one where the postcode lottery for funding works against us. Looking ahead to the transplant, we have also heard that Fabian may be offered the chance to join a new clinical trial which will test groundbreaking gene therapy techniques to improve the effectiveness post transplant of the donor T-cell lymphocytes. In simple terms, this should make them better hunter-killers of leukaemic cells. This may mean a move to Great Ormond Street hospital if all goes ahead. So these are exciting developments for us in terms of accessing the best and latest treatment.
Casting back a week, our trip to Legoland was a much-needed oasis for the family – literally, as it was very wet! We followed this on our return with an impromptu birthday party for Fabian, complete with Lego cake that had been kindly donated to us. Easter, though, will be spent on the ward so the traditional egg hunt will be confined to bed 3; but on the bright side, at least we get to avoid this “spring” weather.