Monday, 31 December 2018

A Better New Year ...

Whatever else 2019 is I hope that it brings with it good news, better times, and is kinder to many friends than 2018 has been. I hope more than anything else that it brings better health to those children in treatment, and continued good health to those in remission. To those parents like me whose children are no longer with them, I hope that 2019 has meaning and purpose, and brings with it times of pleasure and enjoyment.

I’ve been immersed in neuroblastoma research since late 2009 when it became apparent Adam's disease wasn't responding to any available treatment, and we fell off the rollercoaster of standard protocol. A lot has changed in that time, back then there was no treatment for relapsed or refractory neuroblastoma in the UK. Palliative chemotherapy and MIBG therapy. Now there are more trials, more options, treatment with curative intent - despite myths to the contrary perpetuating in some corners of the internet. However, too much has also remained the same. The outlook for children whose disease doesn’t respond to upfront chemotherapy remains very poor. As does that for children whose disease returns after responding and going into remission, with a general rule that the quicker it comes back the worse it is. For children who are free of disease at the end of all treatment the chance of a relapse remains far too great, though again not as high as some numbers quoted online. There may now be a strategy and more trials available for children who don't respond or relapse, but there are still yawning gaps in what is available versus what ought to be.

Remaining involved in research after Adam died was relatively easy once I stepped back into it after 18 months or so away from everything. It’s science, numbers, probabilities, statistics, anonymised cohorts and groups. The reality of each individual child always one-step removed.

Since joining the board of Solving Kids’ Cancer in 2016, first as Research Director/Trustee and now also Chair of Trustees, the hardest part for me by far has been re-engaging with parents and children going through what we once did. Following stories, becoming invested, waiting for updates, hoping for good news and fearing hearing the worst. It was actually a private connection that started me down such a road initially not the charity, but once I’d been forced to face certain truths all over again there could be no going back.

So it is that I find myself still immersed in the research world not only knowing all the truths and having lived most of the realities, but also desperately hoping for better for children whose names I’ve learned and whose stories I’ve come to follow. Now that research, anonymised though it might be in black and white, has an ever growing list of names, faces, little characters and their stories, that I can no longer “pretend” I’m not acutely aware of. Recently diagnosed, not responding to treatment, in remission, relapsed, on hospice care, dead. And it's a good thing that I can't hide anymore, because pretence and disassembling has no place here.

And what of 2019? I could say we have to do more, be better. Who doesn’t say that? We all do. We have to find better and kinder treatments for children with neuroblastoma. Of course that’s true. But I also think back to something Adam would say to me when I was spouting off about something or other … ‘blah, blah, blah, is all I heard’.

I have one over-arching goal for 2019 and it’s really very simple. To do more than anybody else. More on behalf of those names, faces, little characters and their stories, we’re following. More to honour the memory of all the many children whose lives have been claimed by this insidiously evil disease. More for those yet to be diagnosed, children we will learn of during the course of the next twelve months.

I want us to do things that aren’t being done, things that have never been done; that people either haven’t thought of or has been considered beyond the realms of possibility. I want us to work to help open more trials, providing more options in the UK for children with relapsed and refractory neuroblastoma; either directly through funding, or indirectly through advocacy, influencing and campaigning. I want us to work to be better at joining up what others are funding in terms of lab-based research, or drug development work, to ensure that the most promising agents are moved (translated) as quickly as possible through into clinical trials. I want us to develop more links internationally to make it easier to bring trials to the UK. I want us to work to help improve the standard of care that children with neuroblastoma receive across the UK. I want us to help build processes and infrastructure to be able to accurately provide information to parents and clinicians alike, to be able to monitor progress. Currently, nobody knows what the actual survival rates are for high-risk neuroblastoma in the UK, they’re all bundled up with low and intermediate risk disease in the National Cancer Registration and Analysis Service. Nor does anybody have a truly reliable estimate for the relapse rate for children who reach the end of treatment in the UK with no evidence of disease; everything that is known is based on multinational clinical trials and stored in trial-specific data repositories, and more often than not is reported ‘from the start of XY randomisation’.

Am I crazy? Possibly. Probably. Yet I honestly believe there's an opportunity to do this. The involvement and engagement of our Scientific Advisory Board is verging on unique, mutual trust and respect has been built with UK researchers and clinicians. Our special relationship with Solving Kids’ Cancer in New York, stronger ties with J-A-C-K, and evolving partnerships with other charities around the globe. The knowledge and dedication of our research personnel, heavily embedded as advocates in a growing number of groups and initiatives alongside clinicians and academic researchers. The final ingredient, of course, access to funds. I’m not going to lie nor skirt around the truth; I feel and will always feel for as long as it remains so, an uncomfortableness about our research programme being based largely on unused appeal funds. I know what that means in the majority of cases, I’ve been in the same situation myself. However, as of today that’s where we find ourselves, and we either attempt to make the most of it - for the benefit of children with neuroblastoma now and in the future, or we don’t. Cancer Research UK spent £2M on neuroblastoma last year. Label me whatever you like, but I still believe we can do more with less. It might also be an inconvenient truth to some, but nobody else is working primarily to help children fighting now, nor those diagnosed tomorrow in the literal sense. The quest for more effective and less toxic treatments, an endeavour to which I wholly subscribe and wish for us to contribute to, isn't doing that.

Ultimately, it won’t be for me to decide how well we do in 2019. However, I do promise anybody reading this that however far we do or don’t get, it will not be for lack of trying.

Whatever else 2019 is I hope that it brings with it good news, better times, and is kinder to many friends than 2018 has been. I hope more than anything else that it brings better health to those children in treatment, and continued good health to those in remission. To those like me whose children are no longer with them, I hope that 2019 has meaning and purpose, and brings with it at least moments of pleasure and enjoyment.

Tuesday, 25 August 2015

22 August 2015

IMG 1660 1

The Garden 

So this is it then? The one day of glorious sunshine before the promised bad weather arrives to usher in the end of August, marking the beginning of the end of the summer holidays.

The forecast was right for today at least.

The sun is fiercely hot in an almost cloudless blue sky. Everything is quiet, and still. Once in a while a light breeze blows through, causing the trees to sway gently, but never sufficiently strong enough to disturb the tranquility.

I feel the heat of the sun on my back.

I’m standing in the garden, looking down towards the railway line. Not for any particular reason, this is just where I happen to be. I can’t recall when a train last passed by. There’s no traffic noise from nearby roads. No voices from neighbouring gardens. There are no foxes in attendance, no squirrels scurrying around in any trees. There is literally nothing upon which to focus my attention. And in this moment I’m struck by how utterly peaceful it is.

I take in the silence, and allow my eyes to close.

And I can see them, the two of them. There they are near the end of the garden, up there in the shady area away from the sunlight. The sprinkler is on, spraying out jets of water; first one way, and then the other. Back, and forth, back, and forth, back, and forth. Adam is screaming as the jets move through the vertical and begin to curve down towards him. He’s doing a weird dance, hopping from one leg to the other as though the ground beneath him is covered in hot coals. It isn’t of course, it’s just the excited anticipation of a young child at play. At the last second, just as the water is about to reach him and his screams are at their loudest, he jumps backwards out of the way, and runs round to the other side in readiness for a repeat performance.

And now Jessica is joining in. She’s motioning Adam to go closer, daring him to stand right next to the sprinkler. Now telling him he’s not allowed to move. This time he squeals in delight as the water passes over head, and there is no escaping it. He beckons his big sister to do the same on the other side.

Look at the two of them! Both wearing swimming goggles out in the garden; Adam in blue, Jessica in pink. Of course. Siblings, and best friends. Adam had been wearing a hat to protect his bare head from the sun, but that didn’t last long. Within seconds of getting into the paddling pool he’d adopted his favourite position; hands, feet and head all submerged. The hat now pegged to the clothes line, drying.

Adam wants the beach balls out. And the bags of multicoloured play balls. And the cricket bats. Now he wants to use the hose pipe to put some more water into the paddling pool. Apparently there’s not enough in there any more, and it’s not very fun!

Were it not for his bald head he’d look every part the normal healthy six-year-old boy. A white sun top hides the fact that his chest is wrapped in layers of cling film, beneath which lies the central venous catheter that delivers the chemotherapy direct into his blood system. It doesn’t appear to be bothering him at all though. The worst part was getting him ready, when all he wanted to do was run off and play.

He looks especially beautiful today if that’s even possible! There are beads of water on his scalp and face, that are glistening in the sunlight.

And then, it changes. The paddling pool and sprinkler have disappeared. There’s a badminton net across the garden. We’re playing doubles. Adam’s hand-eye co-ordination is pretty good; perhaps it was the tennis lessons he had before he fell ill?

He’s had enough for the moment. Time to take a drink, and seek respite on the swing seat. He’s going to be the referee. Oh it’s like that is it? Giving the other team an unfair advantage so that Dad loses every time.

And then, it’s gone. I’m back in the here and now. I’m thinking about what I was just thinking about.


Only it’s more than that. Everybody has memories. Life moves forward, and we make new memories. Old ones fade, become less significant.

We live in the present.

Except part of me will always be anchored in the past. There are no new memories of Adam to be made. The selection, good and bad, is finite. And it must be treasured, for to forget is a betrayal.

Today reminded me of that. It was vivid, it was almost real. For a few cherished moments of complete serenity I was living in the past. I hope it’s not too long before I can go back there again.

September is Childhood Cancer Awareness month. 

Tuesday, 28 April 2015

2015 Virgin Money London Marathon ...

Don’t do anything different on race day. Simple enough instructions.

The pre-race plan was to stay with friends on Saturday night, and travel into London from there the following morning. Two-thirds of the way round the M25 I realised I had forgotten to pack anything to eat for breakfast. A frantic Google search ensued; the nearest Waitrose (the only supermarket chain that I know stocks my particular brand of porridge) closed at 8pm. Google Maps estimated we’d just make it. At 7:56pm we pulled up at the front door and I dashed inside. A second unscheduled stop, this time to Tesco to buy the right milk to go with the right porridge, and serenity was restored. You’re now thinking I’m a fussy eater, but I’m really not. And I’m normally very well organised too.

On Sunday morning we travelled up to Lewisham by train. At the station there were lots of people doing as the race day instructions had told them; getting off the train and switching platforms for the DLR to Greenwich, getting off the DLR and switching platforms for the train to Blackheath. We left the station and had a leisurely walk up the hill to Greenwich Park, it took about fifteen minutes. You win some, you lose some.

Greenwich Park was awash with runners. I dropped my kit bag off at the lorries early as there was nothing in it I needed. It wasn’t as if I’d remembered to take tracksuit bottoms to keep my legs warm. At least I’d packed my running gear, and a throwaway jumper to wear pre-race. I then located the entrance to my start pen (4), and plonked myself down on a park bench midway between it and the male urinals. I was feeling quite relaxed, watching the world go by, chatting with a couple of fellow bench warmers. The start pens began filling about 45 minutes before start time; with people clearly determined to spend as long as possible on their feet. Then there were the inevitable late comers, scurrying across Greenwich Park to deposit their bags before wagons rolled.

With 15 or so minutes to go I made my second, and final, use of the toilet facilities and headed to my pen. Soon we were counting down to the start, and within a few minutes of the gun going off we were across the line ourselves. My London Marathon had begun! I started my watch as I passed over the timing mats. I should have checked the official clock too, but it didn’t occur to me at the time that it might be important later.

Of much of the race itself I have only limited recollections in truth; less specifics and more a general sense of the occasion.

People had told me beforehand not to make the (potentially catastrophic) mistake of going out too fast in the first few miles. The course profile on Strava shows miles 3 and 4 as being downhill, and I guess this must be so over the piece. It didn’t seem that way to me when I was running it though. The early miles are residential, and so spectators are often spread out. Mostly people from local communities gathered together, or stood on the steps of their homes, or leaning out of terraced windows. Or, in one particularly memorable case, positioned on the balcony of their home with two massive speakers, blasting out Queen’s Don’t Stop Me Now at full volume.

This was my first marathon, and I’d trained hard for it. I’d followed a plan since the beginning of the year, designed around a 3 hours 30 minute finish time. Training had gone pretty much as well as it could have, a few niggles but no injuries. Managing to hit the targets in the plan left me with anticipated fatigue, but hadn’t completely wiped me out. By the time I reached the 3-week taper phase I’d completed four 20 mile long runs, including two on consecutive weekends.

My taper was awful for the first fortnight; I felt lethargic, my legs were heavy. My asthma flared up as the weather changed, and that coupled, I think, with some anxiety about running my first marathon and all that it meant, left me tight-chested for much of the time. I eased down on the speed work, dropping some interval repeats that I felt were becoming a little too much for me. During the final week the fog lifted, I felt more relaxed, and at ease. My only remaining concern was if it was too hot on race day — the heat, my asthma, and running, do not play well together. Checking the forecast during that week it didn’t seem that I had much to worry about; rain in varying degrees was forecast for most of the day.

As it turned out there was no rain at all. Conditions were near perfect from start to finish, cool and cloudy.

I didn’t settle on a pacing strategy for the race until it had already begun. I realised only the day before that it didn’t actually matter what time I did — so what if the wheels came off later in the race? And thus there was no need to be deliberately conservative and aim for 3:45, which had been my goal for so long.

I started off just running comfortably ‘to feel’; making sure my breathing was steady, my legs felt good. That I could easily hold a conversation — if I’d had anybody to hold a conversation with. I checked my watch intermittently during the first few miles. Not to see whether I was on pace, but to check what pace I was running at, and for reassurance that I wasn't going too fast. I was settled at around 5 to 10 seconds above 8 minute mile pace.

Every now and again for the first couple of miles I’d look on the floor for this ‘thin blue line’ that denotes the exact 26.2 mile distance, and shortest route around the course. Being on the red route there isn’t one, I suppose. Not until it merges with the Blue/Green start. There was a left turn coming up ahead, with a constant stream of runners passing by from right to left. As we filtered round and joined them, a chorus of disapproving boos rang out from the other side of the road! The two groups ran alongside each other for a while before merging together as one. And behold, as if by magic, a thin intermittent blue line appeared.

I didn’t notice any landmarks as such until the ground changed beneath me, and we were running on a kind of paved area. We looped round on a fairly sharp left-hand bend. As we came out of the turn I looked up and left, “Oh wow, that’s the Cutty Sark right next to me. I remember this bit from watching on television” I thought.

Generally speaking, at the pace I was running, and the position I started from, there was no great problem with not having enough space to run in. I’d been advised not to snake all over the road weaving in and out of people, but as it turned out there was no great need to. Once in a while I’d find myself stuck behind people running together, and would have to either run round or between them. A few times I made the mistake of getting myself caught over towards the side as we ran through a water or lucozade station - even when I wasn’t taking anything on board. That’s one time when people do suddenly cut across you and cause you to break stride, or pull up abruptly. Another is when they realise they’ve run past their supporters and decide to turn round and go back to them. You also have to be careful of bottles dropped in the middle of the road — which I assume is a result of selfish people not giving a damn about the rest of us out there. I mean there’s plenty of opportunity to discard them to one side.

Around mile 9 I saw a Run To Live t-shirt up ahead, and as I got closer recognised it was Sara. We exchanged pleasantries — she was looking as good as I felt.

As I approached mile 10 I decided to see how I was doing time-wise. I looked at my watch and worked out that I must have crossed the start line around four minutes after gun time. My average pace was 8 minutes and some seconds. I didn’t know exactly because when you’re out there you are running more than the actual distance. There’s GPS inexactness going on, and there’s also that magical thin blue line. One minute you’re tracking it like a guided missile, and the next you lift your head or your attention turns elsewhere, and when you look back down it’s shifted right over to the other side of the road. I was still feeling very relaxed and comfortable, so I thought I’d try to up my speed a little; get my splits, at least according to my watch, under 8 minute mile pace. I still wasn’t looking for any particular time. At the pace I was going I was heading for a three hours and thirty something minutes finish time. If I could maintain it.

I knew our charity supporters, and hopefully my family, would be around mile 13, just after Tower Bridge. That was quite a memorable moment running across the river, looking up at this amazing structure above me. As we turned right I saw a couple of the elites scorch past on the other side of the road. I saw the flags of Rays of Sunshine Children’s Charity, and as I ran past I saw Alison waving to me — the only person I saw spectating that I knew the whole way round.

I have to confess I wasn’t much of a tourist. I didn’t exactly take in the sights. I recall the Shard standing tall way up ahead of me at one point. And running through Canary Wharf was quite memorable too — not only the imposing buildings, but also the closed-in atmosphere as we ran between them, lined with noisy spectators.

My nutrition strategy was to take on a gel somewhere around every 4 miles, or 30 minutes. I was carrying six, but I’ve found that after five I just struggle with any more; so had Shot Bloks to use for the remainder of the race. I probably took water bottles a couple of times in the first half of the race, and once or twice in the second half. Two or three swigs and discard (sorry Mum, I know it’s a waste). I avoided the Lucozade Sport like the plague — even though I had practised drinking it during training. At half distance I took a water bottle and added an electrolyte tablet. I carried that for a while, and probably drunk half of it. I’m not sure whether I needed it, but psychologically it did me good if nothing else. I’d never completed a marathon before. I was worried about ‘the wall’. I didn’t know what to expect later in the race, when I got to distances I’d never been to before. If something happened at that point it’d be too late.

The next part of the race, up until 40 km was really about ticking off the miles. Running from mile marker, to mile marker. And I even found having the metric 5 km markers at certain points in between helped me. Each one was a step closer to the finish. I still felt good, and I was just running quite happily from checkpoint to checkpoint. The atmosphere was amazing. You’d make a turn and there'd be a sudden barrage of cheers, a band playing, or drums beating — I remember drumming on the roundabout beneath a flyover. That was loud. Now and again the atmosphere, the crowd, the backdrop, would literally give me goosebumps, and make the hairs on the back of my neck stick up.

At around fifteen miles the outsides of my thighs began to hurt. I thought it unusual, in all my training runs, including the 20 milers, I’d never experienced it before. The fact it was bilateral probably helped, it reassured me it wasn’t an injury. And there wasn’t much I could do about it in any case, so I didn’t start stressing too much. As the race progressed the muscles became progressively more sore; but it was bearable, and never interfered with my running form.

A few times after passing mile 20 I got a little carried away, and started thinking about the finish. Only 10 km to go! Only 5 miles to go! I can run that easily! I’ve done it, I’ve run a marathon! Each time I reigned it in fairly quickly. Now was not the time to be getting carried away, or taking anything for granted — I was running farther than I’d ever run before. Just keep concentrated, keep knocking out the miles, Nick. The finish will come soon enough.

For a while I kept wondering if the mythical beast that is ‘the wall’ was up ahead. No, not between miles 20 and 21. Not between 21 and 22 either. I don’t think there was an actual realisation that I wasn’t going to hit it, more that it just faded out of my consciousness.

As I passed the 40 km point I checked the official time clock. 03:24 and change. Adjusting for what it took me to cross the start line that was 03:20, with 2 km to go. Or so I thought. A marathon is 26 miles 385 yards, which I knew. Or 42.195 km, which I did not. In my head I was thinking — and this was the first point during the day that I had — I could get under 3 hours 30 minutes here. 10 minutes for 2 km, 5 minutes per km, 8 minutes per mile. Just keep running. However, that failed to take into account those additional 195 metres.

We passed in front of Big Ben and I realised there wasn’t long left. I started to well up, for the first time in the day. Not a good idea. Not conducive to nice, steady breathing. Put that on hold until later.

As I came down Birdcage Walk, and passed the large red 800m to go sign, I still felt strong. I thought I’d make a run for home. That didn’t last long. I was sure the next large red box up ahead must be 400m to go … you’ve got to be kidding me … 600m to go. I came round the bend and passed beneath the 385 yards to go banner. Then I was on The Mall. I could see the finish … and the clock. I started to increase my pace. And then I started to sprint. This is crazy. I’m sprinting at the end of a marathon. I vividly remember the clock ticking round to 03:33:33. I had no idea how far I had left to go. I had no idea if I could get there before it reached 03:34:00. To hell with it, just give it everything you’ve got. Like the last interval of a speed session — leave it all out there.

As I got closer I realised I might just do it. I might just do it.

I think I’m going to do it. I think I’m going to do it.

I’m going to do it. I’m going to do it.

Oh my god. I did it! I did it!

Well, I think I did it. Did I do it? Who knows, all my timings were approximate anyway.

Whatever, I’d crossed the line. I’d finished. I’d run a marathon. I’d run the London Marathon. I was breathing so hard, and the sprint to the line left me feeling queasy. I couldn’t quite believe I had actually finished. Something that I had always wanted to do. Something that events of recent years had left me needing to do.

As we funnelled through I collected my medal. It was an emotional moment for me. I stopped for the official photo, collected my goody bag, and finisher’s t-shirt. As I walked down the line of lorries to retrieve my kit bag my chest was tight; from the exertion of finishing, from the emotion of finishing. But it soon eased. What an amazing day. What an amazing experience. I’d done it, an ambition for as long as I could remember. I’d completed the London Marathon.

I made my way through to the runners meeting point. And only then did I discover what my actual time was … 3 hours, 29 minutes and 55 seconds. I’d started at 10:14:05, and crossed the finish line at precisely 13:44:00. It was the perfect end to a perfect race.

To say I’m chuffed is an understatement. I still can’t quite believe how perfectly things went. But for me this was always more than just a running race. It turned out to be an experience that will never be surpassed.

Sunday, 21 December 2014

London, Here I Come

I was good at most sports at school, but was never very good at any. I made most of the school teams, but was never the star player. I was good enough at running to make the cross country team each year; but when competing against other schools was only ever an also-ran. A born athlete I most certainly am not.

Looking back on my adult life I've always been an occasional runner. I'd run for spells, most usually during the summer when the weather was better and the days were longer. Come the colder months it'd all come grinding to a natural halt; insufficiently motivated, or committed, I suppose. I've also had lengthy periods, lasting numbers of years, when the only running I ever did involved attempting to catch a train.

In 2007 I saw a physiotherapist after having problems with my right leg, affecting range of movement, and causing constant low-level pain that had started to become debilitating. It was during this period that I began running again, which seemed to ease the discomfort. Apparently one of my muscles, having been neglected for so long, had gone on strike, and a co-worker was doing two jobs to compensate. The more I ran (and the more the physio stuck needles into me) the better my leg felt. When the nights grew shorter I invested in some cold weather running gear. I had my gait analysed on a treadmill and bought proper running shoes. And I embarked on my first ever winter of running.

In 2008 my running became more serious, and I started doing more events. For as long as I can remember I've always wanted to run the London Marathon. And I mean run, not simply get round (which is fine, just not for me). Sometime during 2008 I realised for the first time that I might actually be able to do it. I applied for a ballot place. And received my first rejection (of six and counting). Undeterred, and helped by six months off work whilst between jobs, I started running farther and faster.

And then, the following summer my youngest child, Adam, fell ill. In July 2009 he was diagnosed with cancer; a paediatric cancer called neuroblastoma, of which none of us had ever heard. By the time he became symptomatic it had already spread throughout his body. Despite the prospect of a year undergoing the most brutal and intensive of treatment regimens, his chances of survival were a mere 30%. Running came to an abrupt and complete halt. Marathon ambitions became the furthest thing from my mind.

Adam's disease did not respond well to treatment, but at least it stabilised and stopped spreading. With no further treatments available in the UK we spent the second half of 2011 taking Adam back-and-forth to a small university town in North East Germany. I started running again - well there was nothing else to do there. And it was flat. Like being back at home in Norfolk. Flat. And a bit dull. Starting again was tough, but also quite therapeutic. I'd think a lot about what was going on during those runs, get my head straight. Once more my mind began flirting with marathon thoughts. I had another London ballot rejection (the third of six and counting). And despite always saying my first (and possibly only) marathon would be London I duly signed up to do Edinburgh the following May instead.

Training had been going well. I'd recently run the Surrey Spitfire; at 20 miles it was my longest event thus far. I was starting once more to really believe I was capable. Then on Easter Sunday, whilst out on another long training run, I broke down. Luckily for me at the farthest point from home, with no phone and no money. I couldn't put my foot down without pain shooting up the outside of my lower leg. I managed to walk for a bit, but soon even that became painful. I approached a lady pulling into her driveway and asked if I could use her phone … she told me she'd fetch her husband. Clearly I cut a more menacing figure in shorts and running vest than I had hitherto realised! I called Alison to come and collect me, my marathon dream over once more. A fibular stress fracture would render me inactive for the next couple of months.

In mid-2012 Adam's disease began to progress, and from there things became steadily worse. Any thoughts of getting back to running after my injury quickly ceased. We managed his pain, and we took him to America to one of the leading hospitals, for experimental treatments not available in the UK. We lived out of a suitcase, we slept badly, we ate badly. We were emotional wrecks, and our stress levels were permanently high. I went running once, in Michigan over the winter. It was bitterly cold. I ran/walked about two miles, then spent the rest of the day coughing and wheezing from the freezing air that had invaded my lungs.

In July 2013, four years after he was diagnosed, Adam died at home in our arms. He was just nine years old. Wed known for months that he was dying, but the loss when it happened was so much worse than I could have ever possibly imagined. For me lacing up my shoes and hitting the road was one of the most important things that helped me cope. I say 'hitting'; the first time I went out I managed less than a mile before I had to stop and walk. There was something slightly demoralising about how much worse I had gotten, about being back to square one; except when stacked up against the fact my child had just died, then it didn't matter a jot. The morning after Adam's funeral I completed my first, albeit very slow, non-stop 5K in more than a year. Including shouting every expletive imaginable at myself whilst trying to make it up a (very short but fairly steep) hill past some allotments. It's hard to convey the out-sized sense of joy I felt at achieving this particular feat on this particular day.

And so my running continued. After going back to work I'd return home some days and be full of anger and hatred, and generally unpleasant to be around. By going for a run I'd get most of it out of my system, and come back in a much more agreeable mood. The mileage began to steadily increase again. Worried about my stress fracture I started cycling and swimming to cross train, which almost inevitably led me to triathlon. At school I was a rubbish swimmer and hadn't swum, except messing about on holiday, for over 25 years. I've been at it now for just over a year and I'm still distinctly average, but that's still a lot better than I ever thought I’d be.

When the first anniversary of Adam's death came round, and the dark clouds descended, I threw myself into exercise. An olympic distance triathlon at Eton Dorney, the London Triathlon (sprint distance), the British London 10K, Thunder Run 24, and Ride London 100. All in the space of four weeks. It was my way of coping. I'd have done more if I could have gotten away with it.

And so to my date with destiny and the London Marathon. In October I was notified of my latest ballot rejection (number six and counting in case you were wondering). Having said I'd only do it if I got in through the ballot, because then it was meant to be, I simply couldn't accept not getting in this time round. And so next April I will be lining up several miles back from the start line proudly wearing the vest of Rays of Sunshine Children's Charity. Since Adam died we have been working our way through all the charities and organisations that helped him, and us, throughout his illness. Trying to give something back. RoS are a wish charity who arranged our final ever day out as a family two months before Adam’s death, at Harry Potter Studio Tour. I've not watched the video they shot yet, it's still too painful to bear. However, on the afternoon before Adam's death he and I sat on the bed together and looked through the photos from that day. It's a memory that will live in my heart forever.

I hope to raise as much money as possible for this wonderful charity. And I have also set myself a target finish time of 3 hours 45 minutes. A tough ask for a first-timer, but I think it’s achievable if everything goes in my favour. In any case I’m going to give it my absolute best. For myself, and for my little boy. 

Whenever I ran an event I'd always have the same conversation with Adam when I came home:

"Did you win, Dad?"

"No, Adam"

"Where did you come then?"

"Seven hundred and sixty eighth" (or whatever it was).

"You're rubbish!"

He still took my finishers medal each time though, and kept it as a souvenir. They all hang on his bed, including those I've gained since he died. Adding a VLM finishers medal would just about complete the collection I think. And in the meantime all that running (and cycling and swimming) will continue to help keep me on an even keel, and be my release whenever the darkness descends.

Please visit my JustGiving page at, or by clicking on the image below.

Friday, 11 July 2014

Twelve Months On …

Two pairs of slippers sit alone beside the shoe rack in the hall, unworn since the final blood transfusion one week before he left us. During those last few months the brown moccasin pair would get such an outing each week; along with his grey Albion jacket, worn over pyjamas he otherwise lived in. The second pair, closed-toe, open-back, soft and spongy, he wore in America, when we travelled seeking hope one more time; only to return finally defeated and bereft. The football pattern that adorns them would elicit comments and compliments from hospital staff, as he sat in his over-sized pushchair, en-route from hospitality house to clinic.

The jacket, the one he would wear on ever less frequent ventures outside, still hangs on its appointed hook in the under-stairs cupboard. Beneath all the others that have been in and out, taken down and hung up again, over the past twelve months. Much like his blue coat that sits lonely on its peg in the side passage. We bought it in Germany, during the six months that we travelled back-and-forth for treatment. Preparation for harsh winter weather that never materialised. Even so, he wore that coat a lot; it was a good coat. It still is; just destined never again to fulfil the purpose for which it was bought.

Toys, books, games, teddies, consoles, collections of stuff; all as he left them. His key rings; some bought, others acquired from friends and relatives, or sent to him by complete strangers through the Post Pals charity. Sorted one key ring at a time, a few days before he passed, into separate boxes for 'favourites', and 'the rest'. There they remain; just as he sorted them, just as he wanted them.

His bedrooms remain dormant, and mostly untouched.

Bedrooms, plural; for he has two. In the first is a cabin bed with built-in drawers and desk, slept in throughout the time he remained stable. For many months, during which he even joyously returned to school, that we hoped would extend to many more beyond; a hope torn apart as his disease became active again. Thrusting us back into a world of torment.

The second a spare room into which he moved, when his physical condition rendered a cabin bed unsuitable. In there is a single, wooden frame, low to the floor. The first full-size bed bought for our eldest, and which through the years all three of our children have claimed as their own. Whilst the room may once have been spare, it most certainly became his. Small and cosy, decorated in his chosen hues of blue and green; that still adorn its walls today, and which must never be changed.

As time passed, and the cancer took hold, he moved again; sleeping in our bed whilst I took his. In the week of his death a special mattress was delivered, designed to prevent worsening of newly-formed bed sores. It was uncomfortable, made him hot; he was unable to sleep. In the aftermath of a terrible, restless, night, he asked if he could try sleeping elsewhere. We carried him, tired and frail, from our room to his; set him down gently into the bed. His bed.

And there he slept, peacefully, for one final time. Our nine-year-old son.

Wednesday, 31 July 2013

In celebration of the life of ...

One of the most undecided things about yesterday's service was what to call it. It wasn't a funeral and neither was it a celebration. In the end, and rather at the last minute, we decided the Order of Service should carry the title 'A celebration of the life of'. It wasn't until after the event that I finally realised what the service actually was, and that there was no conflict in it; a simultaneous celebration of Adam's life and mourning of his death. Mind you, that would have been a rather pompous, and generally rubbish, title to put on an Order of Service.

For anybody who doesn't follow Adam's Appeal on Facebook or Twitter, this is his Chapel Service …


Adam OoS 2


Hey Adam,

After two weeks of not being able to think of what to say to everybody, all of a sudden it dawned on me. It’s not everybody I should be speaking to, it’s you.

I’m very proud of you son. Not for any extraordinary feat, not for achieving this, or winning that. I’m simply proud of YOU. My polite, courteous, kind, caring, loving, smiling, funny, happy, little boy. An ordinary child, with an ordinary child’s outlook on life, despite facing things no child should have to face.

You had every right to bemoan your lot Adam, and yet in four years I could count on the fingers of one hand the times you did so. It would’ve been understandable if you’d grown to hate everything you had to go through, and everyone who put you through it, and yet you never let hate enter your heart. You never envied, you never begrudged, and you never sought pity. You lived each day as best you could; and if today was a rubbish day you didn’t dwell on it, just hoped for better tomorrow instead.

Hospitals, nurses, drugs, scans, transfusions, pokes and prods ... they were a sideshow. Adam’s Appeal and publicity, that was slightly bemusing. Home, family, friends, and having fun that was the important stuff. Remember when we took you to Germany for treatment Adam? You used to cry as we drove away from the house because you were leaving Jake and Jess. We had to refer to them as Thing1 and Thing2 so you didn’t get to hear their names. More recently when you were in America, it was never long before you were ready to return home again.

Things didn’t work out as we’d hoped little man, but know that we always did the best we could, and we always did it out of love.

I knew you Adam. I had the privilege of being your Dad. Others only got glimpses, and some saw only that which I shared with them. Today is your day, and you should take centre stage. So this is my tribute to you - I hope you approve.

Love you son. Always.

Adam OoS 3

Adam OoS 4

Our brother … forever

Your beautiful smile
could light up the room,
like a shining beacon,
the sun, and the moon.

Your infectious giggle
and your cheeky grin.
Your tongue poking out
… well where do I begin?

Loving and caring,
courageous and brave.
You taught us all much
about how to behave.

Gadgets, light sabres,
morphers and guns,
you sure were a boy
who liked to have fun.

That fun and that laughter,
those games that we played.
I really must tell you,
I wish you had stayed.

But you'll be in our hearts,
we are birds of a feather.
Siblings together,
our brother …. forever.

They say there is a reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.

Adam OoS 5

Adam OoS 6

Adam OoS 7

As I've said to a few people, yesterday was not a day that any parent can look forward to. But thanks to the people who helped put together the service, and those who came and shared it with us, we will always be able to look back on the day with satisfaction and contentment knowing we did it right for our son.

Here is the message I posted on Facebook last night.

Thank you to everybody who came today as we said goodbye to Adam. And thanks for all the messages of support that we have received. It was such a hard day, the like of which none of us have ever experienced before, nor ever wish to again. I would have liked to have gotten all my words out without breaking down, but I always knew that part was likely to get me and having written it I couldn't leave it out.

The day though hard was also wonderful in its own way. The tone was perfect, just as we had wanted it, and everybody who participated made it what it was.

To Roz and the choir for their beautiful rendition of "I wish I knew ..." and for carrying us all in the hymns, Adam and Hels for the perfect music to accompany us in and out, Lisa for preparing the order of service, Martin Ellis for playing the chapel organ, Emily for delivering Alison's chosen reading in her stead. Sincerest thanks to you all.

Thank you to Canon Esdaile who has been brilliant throughout this difficult process, helping us plan the order of service and conducting the services at the Chapel and Crematorium.

Thank you to Epsom College for not only granting us our wish to use the Chapel for Adam's service, but for providing refreshments afterwards in the College and for giving us their total support throughout.

To my wonderful daughter Jess who somehow transformed herself from an emotional wreck to a tower of strength in order to deliver her reading ... I have a heart bursting with pride. As we left the Chapel I said to her how did you do that? She gave me a nod and said cheekily 'it's a gift'. Well it's definitely something special that's for sure.

And to my little boy whose life we celebrated and death we simultaneously mourned today ... thank you for the love that will live on forever in our hearts. x"

Sweet dreams little man. Daddy loves you so much. Always and forever. x

Wednesday, 24 July 2013

Service of Thanksgiving ...

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A memorial service for Adam will be held at 11am on Tuesday 30th July in the Chapel of St Luke within the grounds of Epsom College, followed by a private cremation for family only at Randall's Park, Leatherhead.

All are welcome to attend the Chapel service. There is no preferred dress-code.

Refreshments will be served in the main school following the Chapel service.

We are requesting no flowers. Anybody wishing to make a donation in memory of Adam, or in lieu of flowers, is asked to do so in favour of paedeatric services (Casey and Ebbisham wards, and the community care team) at Epsom Hospital who looked after Adam with such care and diligence throughout the course of his illness.

A retiring collection will be held after the Chapel service.

Cheques should be made payable to 'Epsom and St Helier University Hospitals NHS Trust' and may be sent c/o W A Truelove & Son, 14/18 Church Road, Epsom, Surrey, KT17 4AB.

An online giving page has also been setup at

In view of the ongoing roadworks near the College, those attending the service are advised to approach from Epsom town centre and use the main entrance, or from Epsom Downs and use the Sports Hall entrance on Longdown Lane South.