tag:blogger.com,1999:blog-53566027943773891772024-03-13T20:00:57.354+00:00Adam's Appeal - Fighting NeuroblastomaIn July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. He was just 9 years old.birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.comBlogger294125tag:blogger.com,1999:blog-5356602794377389177.post-25760054471113870372021-10-01T09:47:00.004+01:002021-10-01T13:25:25.804+01:00Bents Charity Butterfly Ball<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bg-gUgMtph4/YVbJPA3yCGI/AAAAAAABIRw/zYg10h7eIe8Lc-seD2lAfEIfEWtl_NDrACLcBGAsYHQ/s2048/E_gvBEgXEA4rIcj.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1152" data-original-width="2048" height="294" src="https://1.bp.blogspot.com/-bg-gUgMtph4/YVbJPA3yCGI/AAAAAAABIRw/zYg10h7eIe8Lc-seD2lAfEIfEWtl_NDrACLcBGAsYHQ/w522-h294/E_gvBEgXEA4rIcj.jpeg" width="522" /></a><br /><br /></div><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">Last month I had the enormous pleasure of attending the Bents Charity Butterfly Ball at the Lowery Hotel in Manchester. <a href="https://www.solvingkidscancer.org.uk/" target="_blank">Solving Kids' Cancer UK</a> are Bents Garden & Home (<a href="https://www.bents.co.uk" target="_blank">https://www.bents.co.uk</a>) charity of the year, raising money in memory of Jossie Leaver (you can read about Jossie <a href="https://www.solvingkidscancer.org.uk/appeal/jossie-leavers-journey">here</a>). Jossie's parents, Cassie and Stewart, were in attendance along with some of the Solving Kids' Cancer UK team and we were joined by the parents of <a href="https://www.facebook.com/lucysmission" target="_blank">Lucy</a> and <a href="https://www.facebook.com/AnyaBenthamAppeal" target="_blank">Anya</a>. The family of Reggie Hayes were also at the event (<a href="https://www.manchestereveningnews.co.uk/news/greater-manchester-news/dont-think-its-just-tummy-21293245">https://www.manchestereveningnews.co.uk/news/greater-manchester-news/dont-think-its-just-tummy-21293245</a>). There was laughter and there were tears. It was a special evening, and in the aftermath of (hopefully) the worst of the pandemic felt even more so. The total amount raised in Jossie's honour far exceeded all expectations and I can only once again extend sincerest thanks to all those who attended and gave so generously to help children with neuroblastoma. Along with Stewart and Chief Executive Gail Jackson, I was asked to say a few words that are shared below.</p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><br /></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">"I would like to begin by adding my own personal thanks and that of my fellow Trustees to Bents, to everyone involved in organising tonight’s event at this wonderful venue, to all of you for coming, and especially to Cassie and Stewart for continuing to support the charity in Jossie’s memory and honour. It means a great deal to us.<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">I may be the Chair of Trustees of Solving Kids’ Cancer but the reason I stand here today is because I’m Adam’s Dad. My youngest son was just 5-years old when he was diagnosed with neuroblastoma in 2009. Not uncommonly it took months for Adam to be diagnosed, by which time his entire body was riddled with cancer and he could no longer walk or sit down due to excruciating bone pain. In an instant our lives unravelled, never to be put back together again. Treatment spanning 4 years took us from London to Germany to America but had almost no impact on Adam’s disease and he died at our home in the summer of 2013 surrounded by the fiercest love and most crushing heartache imaginable.<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">I first became involved in Solving Kids’ Cancer in 2009 when the charity was nothing more than a lone part-time member of staff and a group of committed parents who had come together to help their children. Since then, the charity has gone on to support many children and families, with unrivalled care and compassion that combines personal experience with a deep knowledge of the neuroblastoma landscape. Families whose children are sadly no longer with us can at least take some comfort from knowing they did all they could, and without our help would have had even less precious time with their beautiful children. Without doubt our greatest achievement is that there are children alive today, growing up and free of neuroblastoma, who would not be here had this charity not helped and supported them to access the right treatments at the right time. No matter the odds, as parents we must believe that our son or daughter will be one of the lucky ones, we need that hope. Solving Kids’ Cancer gives parents that hope, and for some it has helped to turn that hope into the gift of life.<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">But we do not want to simply be a charity that only helps one child at a time. We always will of course, our door is permanently open to families in need. But we want all children and families to have the same hope and the same opportunities. When I joined our Board in 2016 there was only one charity in the UK that supported clinical research for children with neuroblastoma. Why? Because it’s extraordinarily costly, complicated and requires vast amounts of knowledge and effort. Actual trials in the hospital to provide access to new therapies that can cure more children. Other funding for laboratory research is important of course, but on its own it can achieve nothing. With that one charity, CRUK, allocating only a fraction of its total funding to all children’s cancers combined competition was fierce, and children with neuroblastoma had to get in line and wait their turn for access to new treatments and trials. But children with neuroblastoma don’t have time on their side and so we had this crazy notion that a small parent-led charity full of passionate and committed people could change how everything worked. We would dare to do what nobody else was and we would become the research champions that children with neuroblastoma in the UK so desperately needed.<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">Five years on from that crazy notion we have made incredible progress. We are not rich enough as a charity to be able to do anything by ourselves meaning we have had to work doubly hard to build collaborative funding partnerships to deliver what we know children need. Last year we awarded $1.4M to deliver the first ever joint clinical trial between America and Europe for children with neuroblastoma. We also became the principal UK funder of a Europe-wide clinical trial that will enrol all newly diagnosed children with high-risk neuroblastoma from every part of the UK. And this year we have committed £1M to bring an exciting new combination therapy into the clinic for children over the next 2-3 years, and a blood test to identify which children will benefit most from it. None of this would have been possible without friends and charity partners who have worked with us, and none of it would have been possible without Solving Kids’ Cancer’s leadership, vision, dedication, and commitment.<o:p></o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><o:p> </o:p></p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;">I could actually speak all night about this and happily will if anybody wants to come and find me later, but I need to wrap things up so will end by saying this. Being the beneficiary of tonight’s event is a massive honour for us at Solving Kids’ Cancer UK. Every penny you give this evening, everything you do to support us as Bent’s Charity of the Year and perhaps even beyond that, know that we really do care about children afflicted by this awful disease, and we really are doing everything we possibly can to help them and their families. We are making a difference and we are going to continue to make a difference. This is what I want each of you to take away from being here this evening."</p><p class="MsoNormal" style="font-family: Calibri, sans-serif; line-height: 32px; margin: 0cm; text-align: justify;"><br /></p>birdnihttp://www.blogger.com/profile/07969044416050791422noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-18745362792453965692020-02-03T21:28:00.001+00:002020-02-05T08:08:52.085+00:00Forever Dad<div style="font-family: geneva; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Finally, I got to see you again. It’s been far too long and I’ve missed you so much. I’m sorry about being away. I was excited, giddy for the imminent surprise reunion. For you didn’t know I was coming back to see you. As I came through the trees there you were, crazy fool, playing in a shallow pool of water. Wearing that turquoise and purple hooped shirt, one of my absolute favourites. Bent over at the waist, hands and top of your head submerged. The times I’ve seen that pose before! You lifted your head from the ground as if sensing a presence approaching, and turned towards me. And as realisation dawned, with arms outstretched and face beaming with that most beautiful smile, I heard your voice once more. “Dad!”, you exclaimed.</span></div>
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<span style="font-kerning: none;">And you were gone again, and I was awake. A stream of steady tears running down my cheeks from where I’d been silently crying. </span></div>
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So totally unexpected. How long has it been? I can’t even remember. A gift from the mind to bring great joy and a stabbing blow to renew bitter sadness. That shirt in photos that sit on the mantlepiece. That pose from the photo on the bookcase, taken on the beach in Cornwall. A scene constructed from bits of what’s left, of something that never was, as a beautiful and painful reminder of who I am. A forever Dad of his forever much-loved little boy. Until I see you next time, Adam. </div>
birdnihttp://www.blogger.com/profile/07969044416050791422noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-75177682276768180012019-07-08T09:00:00.000+01:002019-07-08T09:00:06.143+01:00LETTING GO …<p>I wrote this just a few days before Adam died. I never actually posted it at the time in its own right. Can't recall why, most likely because it was for me not anybody else. I'd forgotten I'd ever written until a friend reminded me by making reference to it a while back. I think about it often now when I see other parents faced with the same inevitability. It's almost impossible for me now to comprehend how this was ever my reality.</p>
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<b>Monday 8th July 2013</b>
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<p>For reasons I do not fully understand an odd sense of calm has descended upon me these past few days. I think perhaps I have finally come to realise, understand, and begin to accept.</p>
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<p>There is a time to fight, and we did that, for as long and as hard as we could; perhaps too long though I don't believe so.</p>
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<p>There is a time to hold on, to focus on taking out of each day whatever you can within the limits of what circumstances will allow. We've been there a couple of times. After Adam completed immunotherapy, before a single suspicious lymph node was revealed to be the precursor to full-blown progression. And just recently whilst Adam has been comfortable at home, and we've been able to enjoy simply being in his company each day, overlaid with occasional special moments like our trip to Harry Potter Studios, and the school Tombola.</p>
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<p>And then there is a time to let go … and now is that time.</p>
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<p>It may seem a bizarre thing to say, but I actually feel fortunate right now. In the context of what we are facing to have had the time that we have, over two months of it, with Adam free of pain, lucid and coherent, has been more than we could have dared hope for. That's not to say it's any easier, or less traumatic, or our hearts are any less broken, or there isn't a constant undercurrent of tears in my eyes ready to burst forth at any given moment. But we have been afforded something that many are not, and as a consequence I've gained a perspective that I otherwise wouldn't have.</p>
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<p>We have decided the time is right to stop taking Adam to hospital to receive blood transfusions. It's better that he stays at home where he is comfortable, and we continue to care for him as best we are able. Whilst I have no idea precisely what the coming days will hold, my one fervent wish is for Adam to remain comfortable and without pain.</p>
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<p>From the very start of this journey, Alison and I have always done what we believed was the right thing for Adam, for the right reasons. So I can't now allow myself to be the cause of unnecessary suffering through my own selfish (though perfectly natural) desire for Adam to remain with us for as long as possible. Letting go, not giving up.</p>
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<p>Letting go … the easiest thing of all … and the hardest thing of all.</p>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-5444968705460337142018-12-31T14:34:00.000+00:002018-12-31T14:47:07.967+00:00A Better New Year ...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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 </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">acutely </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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’.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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’.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">---</span>birdnihttp://www.blogger.com/profile/07969044416050791422noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-47889630246935534402015-08-25T09:54:00.000+01:002015-08-25T09:54:58.695+01:00<div style="text-align: left; color: #333333; margin-right: 2em;">
<p><span style="float: right; font-size: 9.000000pt; font-family: 'Helvetica'; font-weight: 600; color: rgb(66.768800%, 66.778870%, 66.766600%);">22 August 2015 </span></p>
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<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">The forecast was right for today at least. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">I feel the heat of the sun on my back. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">I take in the silence, and allow my eyes to close. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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! </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">Were it not for his bald head he’d look every part the normal healthy six</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">-</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">year</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">-</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">He looks especially beautiful today </span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">— </span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">if that’s even possible! There are beads of water on his scalp and face, that are glistening in the sunlight. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">-</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">eye co</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">-</span><span style="font-size: 11.000000pt; font-family: 'Helvetica';">ordination is pretty good; perhaps it was the tennis lessons he had before he fell ill? </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">And then, it’s gone. I’m back in the here and now. I’m thinking about what I was just thinking about. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">Memories. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">Only it’s more than that. Everybody has memories. Life moves forward, and we make new memories. Old ones fade, become less significant. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">We live in the present. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
<p><span style="font-size: 11.000000pt; font-family: 'Helvetica';">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. </span></p>
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<p><span style="font-size: 15.000000pt; font-family: 'Helvetica'; color: rgb(0.000000%, 56.717780%, 54.469650%);">September is Childhood Cancer Awareness month. </span></p>
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</div>birdnihttp://www.blogger.com/profile/07969044416050791422noreply@blogger.com1tag:blogger.com,1999:blog-5356602794377389177.post-88377011638103206992015-04-28T20:13:00.001+01:002015-04-28T20:59:48.912+01:002015 Virgin Money London Marathon ...<p>Don’t do anything different on race day. Simple enough instructions.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Of much of the race itself I have only limited recollections in truth; less specifics and more a general sense of the occasion.</p>
<p>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 <em>Don’t Stop Me Now</em> at full volume.</p>
<p>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.</p>
<p>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.</p>
<p>As it turned out there was no rain at all. Conditions were near perfect from start to finish, cool and cloudy.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>As I got closer I realised I might just do it. I might just do it.</p>
<p>I think I’m going to do it. I think I’m going to do it.</p>
<p>I’m going to do it. I’m going to do it.</p>
<p>Oh my god. I did it! I did it!</p>
<p>Well, I think I did it. Did I do it? Who knows, all my timings were approximate anyway.</p>
<p>Whatever, I’d crossed the line. I’d finished. I’d run a marathon. I’d run the <em>London Marathon</em>. 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 <em>needing</em> to do.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com5tag:blogger.com,1999:blog-5356602794377389177.post-78355321919325335892014-12-21T18:52:00.000+00:002014-12-22T09:00:41.541+00:00London, Here I Come<div style="text-align: left; color: #000000;">
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<p style="margin: 0px 0px 18px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="-webkit-text-stroke-width: initial; font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="color: #000000; font-family: 'Myriad Web Pro';"><span style="font-size: 16px; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;">In July 2013, four years after he was diagnosed, Adam died at home in our arms. He was just nine years old. We</span><span style="font-size: 16px; -webkit-text-stroke-color: #000000;">’</span><span style="font-size: 16px; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;">d 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.</span></span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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. </span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">Whenever I ran an event I'd always have the same conversation with Adam when I came home:</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">"Did you win, Dad?"</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">"No, Adam"</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">"Where did you come then?"</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">"Seven hundred and sixty eighth" (or whatever it was).</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">"You're rubbish!"</span></p>
<p style="margin: 0px 0px 12px; font-size: 12px; font-family: Helvetica; -webkit-text-stroke-color: #000000; -webkit-text-stroke-width: initial;"><span style="font-size: 16px; font-family: 'Myriad Web Pro';">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.</span></p>
</div>
</div>
</div>
</div>
<div class="section" style="color: #000000;"><hr /></div>
<div class="section" style="color: #000000;">
<p><span style="font-family: 'Myriad Web Pro'; font-size: 16px;">Please visit my JustGiving page at <a href="http://www.justgiving.com/vlm4adam">http://www.justgiving.com/vlm4adam</a>, or by clicking on the image below.</span></p>
</div>
<div class="section" style="color: #000000;"><a href="https://www.justgiving.com/vlm4adam"><img style="display: block; margin-left: auto; margin-right: auto; margin-top: 2em; margin-bottom: 2em;" title="JustGiving RoS.jpg" src="http://lh3.ggpht.com/-gP13e4N009A/VGD-y-vb-_I/AAAAAAAAC84/ujGOOEq6SDA/JustGiving%252520Page%252520RoS.jpg?imgmax=800" alt="JustGiving RoS" width="480" height="756" border="0" /> </a></div>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-24898923165217144482014-07-11T09:05:00.000+01:002014-07-11T09:22:15.745+01:00<div style="text-align: left; color: #000000">
<div style="background-size: cover; background-image: url("http://lh6.ggpht.com/-pcug83zB1S0/U7hdJvXPJ0I/AAAAAAAACuo/b0ppcijJpPE/Background.jpg"); background-repeat: no-repeat; padding:100px 32px 100px 32px;margin-top:-34px; margin-left:-20px; margin-right:-20px; margin-bottom:-42px; border: 2px solid;">
<h3 style="color: #000000;line-height: 150%;">
Twelve Months On …
</h3>
<p>
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.
</p>
<p>
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.
</p>
<p>
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.
</p>
<p>
His bedrooms remain dormant, and mostly untouched.
</p>
<p>
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.
</p>
<p>
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.
</p>
<p>
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.
</p>
<p>
And there he slept, peacefully, for one final time. Our nine-year-old son.
</p>
</div>
<div style="margin-bottom:68px;">
</div>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com4tag:blogger.com,1999:blog-5356602794377389177.post-18635887122816052382013-07-31T16:17:00.001+01:002013-07-31T19:59:35.564+01:00In celebration of the life of ...<div style="text-align: justify; color: #333333">
<p>
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.
</p>
<p>
For anybody who doesn't follow Adam's Appeal on Facebook or Twitter, this is his Chapel Service …
</p>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh6.ggpht.com/-IIIrWHQhSco/UfkqbNnUUjI/AAAAAAAACok/v-iCs-PO0uk/Adam%252520front%252520cover%252520copy.jpg?imgmax=800" alt="Front" title="Front.jpg" border="1" width="423" height="600" style="float:left;" />
</p>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh5.ggpht.com/-oSx9O0JhnEY/UflKU37UMMI/AAAAAAAACo0/v1SNSqLAx1E/Adam%252520OoS%2525202.jpg?imgmax=800" alt="Adam OoS 2" title="Adam OoS 2.jpg" border="1" width="424" height="600" style="float:left;" />
</p>
<h3 style="margin-top:24px;text-align:center;">Reflections</h3>
<div style="margin-left:6em;margin-right:6em;">
<p>
Hey Adam,
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
Love you son. Always.
</p>
</div>
<iframe style="display:block; margin-left:auto; margin-right:auto;" src="http://player.vimeo.com/video/71368534" width="424" height="238" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh6.ggpht.com/-wEdwhI-BEYo/UflKVk0e8LI/AAAAAAAACo8/bULywF1irmk/Adam%252520OoS%2525203.jpg?imgmax=800" alt="Adam OoS 3" title="Adam OoS 3.jpg" border="1" width="423" height="600" style="float:left;" />
</p>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh6.ggpht.com/-oe7N5rtJsxM/UflKWSMvV7I/AAAAAAAACpE/HgJeFY-OWaM/Adam%252520OoS%2525204.jpg?imgmax=800" alt="Adam OoS 4" title="Adam OoS 4.jpg" border="1" width="423" height="600" style="float:left;" />
</p>
<h3 style="margin-top:24px;text-align:center;">Our brother … forever</h3>
<div style="text-align:center;">
<p>
Your beautiful smile<br>
could light up the room,<br>
like a shining beacon,<br>
the sun, and the moon.<br>
</p><p>
Your infectious giggle<br>
and your cheeky grin.<br>
Your tongue poking out<br>
… well where do I begin?<br>
</p><p>
Loving and caring,<br>
courageous and brave.<br>
You taught us all much<br>
about how to behave.<br>
</p><p>
Gadgets, light sabres,<br>
morphers and guns,<br>
you sure were a boy<br>
who liked to have fun.<br>
</p><p>
That fun and that laughter,<br>
those games that we played.<br>
I really must tell you,<br>
I wish you had stayed.<br>
</p><p>
But you'll be in our hearts,<br>
we are birds of a feather.<br>
Siblings together,<br>
our brother …. forever.<br>
</p>
</div>
<h3 style="margin-top:24px;text-align:center;">They say there is a reason</h3>
<div style="text-align:center;">
<p>
They say there is a reason,<br>
They say that time will heal,<br>
But neither time nor reason,<br>
Will change the way I feel,<br>
For no-one knows the heartache,<br>
That lies behind our smiles,<br>
No-one knows how many times,<br>
We have broken down and cried,<br>
We want to tell you something,<br>
So there won't be any doubt,<br>
You're so wonderful to think of,<br>
But so hard to be without.<br>
</p>
</div>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh4.ggpht.com/-OtIBpNPxQBU/UflOCETmBxI/AAAAAAAACpU/c0-sBaT5hZ0/Adam%252520OoS%2525205.jpg?imgmax=800" alt="Adam OoS 5" title="Adam OoS 5.jpg" border="1" width="424" height="600" style="float:left;" />
</p>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh5.ggpht.com/-BoKSLD2DJrY/UflOC4Nc9JI/AAAAAAAACpc/Fufn9POpz9I/Adam%252520OoS%2525206.jpg?imgmax=800" alt="Adam OoS 6" title="Adam OoS 6.jpg" border="1" width="423" height="600" style="float:left;" />
</p>
<p style="margin-top:24px"><img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh5.ggpht.com/-7AxKgo9Qc-E/UflODzYo2UI/AAAAAAAACpk/aQUuooE1IwA/Adam%252520OoS%2525207.jpg?imgmax=800" alt="Adam OoS 7" title="Adam OoS 7.jpg" border="1" width="424" height="600" style="float:left;" />
</p>
<p style="margin-top:24px">
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.
</p><p>
Here is the message I posted on Facebook last night.
</p><div style="margin-left:2em;margin-right:2em;"><hr>
<p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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.
</p><p>
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"
</p><hr>
</div>
<p>Sweet dreams little man. Daddy loves you so much. Always and forever. x</p>
</div>
birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com2tag:blogger.com,1999:blog-5356602794377389177.post-91315970239272607232013-07-24T11:30:00.000+01:002013-07-24T11:29:09.717+01:00Service of Thanksgiving ...<div style="text-align: justify; color: #333333">
<p>
<img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh6.ggpht.com/-I1LprXBx9Bg/UegzMIJ9qaI/AAAAAAAACoU/PzOZwOgfwW8/337-533570.jpg?imgmax=800" alt="DSC 0690 1" title="DSC_0690 (1).jpg" border="0" width="500" height="211" />
</p>
<p>
A memorial service for Adam will be held at 11am on Tuesday 30th July in the Chapel of St Luke within the grounds of <a href="http://www.epsomcollege.org.uk/home">Epsom College</a>, followed by a private cremation for family only at Randall's Park, Leatherhead.
</p>
<p>
All are welcome to attend the Chapel service. There is no preferred dress-code.
</p>
<p>
Refreshments will be served in the main school following the Chapel service.
</p>
<p>
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.
</p>
<p>
A retiring collection will be held after the Chapel service.
</p>
<p>
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.
</p>
<p>
An online giving page has also been setup at <a href="http://uk.virginmoneygiving.com/adamb">http://uk.virginmoneygiving.com/adamb</a>.
</p>
<p>
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.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-56359031237994308802013-07-24T10:52:00.001+01:002013-07-24T11:37:49.001+01:00I can't imagine ...<div style="text-align: justify; color: #333333">
<p>
They are words you see and hear quite a lot after your child dies, in cards of condolence and messages of sympathy. Words that have a certain appropriateness, to convey how unfathomable it all is.
</p>
<p>
"I can't imagine …".
</p>
<p>
To those who have used such a phrase, I can confirm what you already knew.
</p>
<p>
I know this to be true because I myself could never have imagined. I never understood. For as long as I stood on the precipice, knowing each day was a day closer to losing my precious child, I had no idea it would feel like this when Adam was actually gone. I couldn't imagine for one reason alone — he was still with me. You can try to imagine all you like — at times you cannot stop yourself in fact. You can have dark thoughts in your head; they may consume you at night as you drift into sleep, and still be there when you wake in the morning. But these are your fears, they are not your reality. As much as it feels real at the time, it's not. Not when your child is still there, to talk to, to touch, to love, to adore. Not when your child is still there for you to wake up to.
</p>
<p>
When you know that you have kissed them goodnight for the last time; will never again hear their voice, feel their touch, hold their hand, smell their essence. When all you have left to look at are photographs. When all you have left to talk to is an empty space, or a once treasured something. When there is no more making new memories, only hoping you won't forget old ones. When you think of things you wish you'd done, or said, or taken care of — stupid little things much of the time — and know you're never going to have that chance. When nothing you can do or say can ever change anything. When you no longer have fears only absolutes. When there is nothing left to imagine. When this is reality, from now until your own dying day. Only then do you understand.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com3tag:blogger.com,1999:blog-5356602794377389177.post-52983642289936518822013-07-11T13:29:00.000+01:002013-07-13T20:59:04.631+01:00The End ...<div style="text-align: justify; color: #333333">
<p>
This morning at five minutes after nine, lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful little boy Adam took his last breath and left this world. He will live on forever in our hearts.
</p>
<p>
<img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh5.ggpht.com/-FCaYKbNAhFs/Ud7VxRtl5vI/AAAAAAAACoE/XGX-QXOPT_g/DSC_0690%252520%2525281%252529.jpg?imgmax=800" alt="DSC 0690 1" title="DSC_0690 (1).jpg" border="0" width="550" height="365" />
</p>
<p style="margin-top: 3em;">
I wrote the following a few days ago, but never got round to publishing it …
</p>
<h2>Letting go …</h2>
<h4>Monday 8th July</h4>
<p>
For reasons I do not fully understand an odd sense of calm has descended upon me these past few days. I think perhaps I have finally come to realise, understand, and begin to accept.
</p>
<p>
There is a time to fight, and we did that, for as long and as hard as we could; perhaps too long though I don't believe so.
</p>
<p>
There is a time to hold on, to focus on taking out of each day whatever you can within the limits of what circumstances will allow. We've been there a couple of times. After Adam completed immunotherapy, before a single suspicious lymph node was revealed to be the pre-cursor to full-blown progression. And just recently whilst Adam has been comfortable at home, and we've been able to enjoy simply being in his company each day, overlaid with occasional special moments like our trip to Harry Potter Studios, and the school Tombola.
</p>
<p>
And then there is a time to let go … and now is that time.
</p>
<p>
It may seem a bizarre thing to say, but I actually feel fortunate right now. In the context of what we are facing to have had the time that we have, over two months of it, with Adam free of pain, lucid and coherent, has been more than we could have dared hope for. That's not to say it's any easier, or less traumatic, or our hearts are any less broken, or there isn't a constant undercurrent of tears in my eyes ready to burst forth at any given moment. But we have been afforded something that many are not, and as a consequence I've gained a perspective that I otherwise wouldn't have.
</p>
<p>
We have decided the time is right to stop taking Adam to hospital to receive blood transfusions. It's better that he stays at home where he is comfortable, and we continue to care for him as best we are able. Whilst I have no idea precisely what the coming days will hold, my one fervent wish is for Adam to remain comfortable and without pain.
</p>
<p>
From the very start of this journey, Alison and I have always done what we believed was the right thing for Adam, for the right reasons. So I can't now allow myself to be the cause of unnecessary suffering through my own selfish (though perfectly natural) desire for Adam to remain with us for as long as possible. Letting go, not giving up. Letting go … the easiest thing of all … and the hardest thing of all.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com16tag:blogger.com,1999:blog-5356602794377389177.post-2303667182591208242013-07-02T22:09:00.001+01:002013-07-02T22:21:25.175+01:00Return of the Tombola ...<div style="text-align: justify; color: #333333">
<p>
<img src="http://lh6.ggpht.com/-H2_tto0vX_w/UdNBhyE7gvI/AAAAAAAACn0/LXmzDMtTQPk/IMG_0021-1.jpg?imgmax=800" alt="IMG 0021 1" title="IMG_0021-1.jpg" border="0" width="400" height="300" style="float:left;margin-right:12px;" />
Well, I don't entirely know what to say other than an enormous thank you from the bottom of my heart to all you lovely people who ensured that, as a (very welcome) new addition for 2013, there would be a jar tombola at the junior school's celebration evening.
</p>
<p>
When I woke Adam up just after 4pm and asked him whether he wanted to go (having changed his mind several times during the course of the day), he said he was too tired and didn't think he would. But it was a rather equivocal no, and so me being me, I gave him a gentle nudge … and he changed his mind again! We agreed a plan; drive up, get there early, spend a couple of quid, make sure he won something, and be home again in half-an-hour …
</p>
<p>
… or not. We parked his chair in the middle of the stall, and there he remained for the next hour. Studiously examining the jars until he found one (or several) that he liked, then draining the contents of my wallet until he'd picked out enough winning tickets to add them to his collection.
</p>
<p>
I don't know how many sweets he'll actually eat, though I'd wager not that many. I don't even know how many jars he'll open. We could end up spending longer tomorrow sorting sweets than we did today winning them. Equally they could remain untouched in the bag that we brought them home in.
</p>
<p>
It doesn't matter.
</p>
<p>
For two hours today Adam was joining in (well actually he was hogging most of the stall), and having fun. In all likelihood he would have refused to go had he known it was instigated for his benefit.
</p>
<p>
So thank you friends, know that you did a lovely thing. It's too hard for me to describe what it was like to see Adam go along today and really enjoy himself. I can't lie to you and say my heart was full of joy, how can it ever be? But that's alright, it wasn't about me. I can say that today I have experienced something other than sadness and anger. I was happy for Adam, and I was happy for you all too.
</p>
<p>
And now I must go and wipe my eyes — I seem to have a touch of hayfever all of a sudden.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com11tag:blogger.com,1999:blog-5356602794377389177.post-21741063660146365452013-06-27T12:07:00.001+01:002013-06-29T21:35:28.191+01:00It's only a tombola …<div style="text-align: justify; color: #333333"> <p>It was the Junior School Summer Fair last weekend, the school attended by Jessica and at which Adam remains, notionally at least, a member of Year 4. I had no desire to attend, of course. I seldom have much desire to do anything these days. Content to watch Jake play football or cricket, because (a) the primary activity is watching, and (b) any secondary activity such as talking tends to revolve around what’s being watched. Beyond these simple pursuits I am, at present, not much of a willing participant in social interaction, save for perfunctory acknowledgments.</p> <p>On Friday Jessica asked if she'd still be able to go even if Alison and I didn't, and of course we said yes. We had a conversation on the landing about whether we could drop her off at school at 12:30 to meet a friend. Meanwhile, along the corridor in our bedroom where Adam has taken up residence, little ears were flapping; attention briefly stolen away from the iPad he spends most of his waking hours watching. </p> <p>"What were you and Jessica just talking about?" he asked as I entered the room. I duly explained. </p> <p>"I want to go to my school fair too." </p> <p>"You can go if you want to Adam, that's no problem." </p> <p>"Well I do want to go, but you know, only if I'm well enough <em>to go</em>, and I know I'm not going to feel up to it, so I <em>won't</em> go. It's okay, Dad, I <em>won't</em> go." </p> <p>"It's entirely up to you Adam. It's not until Sunday so you don't need to decide now." </p> <p>"But I know I won't be up for going. Ok, Dad? <em>Ok</em>?" </p> <p>"Ok Adam." </p> <p>There is a familiarity in this. Things that Adam <em>wants</em> to do, things that Adam <em>thinks about</em> doing, things that Adam's body <em>simply won't allow</em> him to do. One minute he's going to do something, a few minutes later he cannot muster sufficient energy or enthusiasm to actually do it. The moment has passed and we move on. We have come to accept it for what it is, and will give silent thanks for as long as he retains the capacity to even think in such terms.</p> <p>At his last full blood count (after which we stopped bothering to even do them any more) Adam's haemoglobin (the main component of red blood cells, responsible for carrying oxygen away from the lungs to the rest of the body) was 2.8. Normal level would be above 12, and for a child on active treatment below 7 represents the lower threshold for transfusing blood. Our expectations regarding what he might be both willing <em>and able</em> to do nowadays are limited, to say the least. </p> <p>On Saturday Adam woke late. His hours are varied these days. He may sleep until midday or beyond, and might then remain wide awake into the hours approaching midnight. We don't try and enforce any particular structure upon him, but instead allow ourselves to be guided by how he feels and behaves on any particular day. Except for the need to stir him in the early hours for essential medications on days where he has woken exceptionally late, it doesn't present any great burden. He mostly drinks alright considering, and eats little amounts as and when he feels like it; his appearance has become painfully gaunt and pallid. Most importantly though, he remains without pain, and in no distress.</p> <p>After having a little breakfast he announced that it was time for him to have a bath. </p> <p>"I need to be clean and fresh for my school fair tomorrow," he said. </p> <p>I looked at him through sceptical eyes. He'd been in the bath once since we last returned from America, and lasted about fifteen minutes before he was asking to get out again. But he seemed pretty determined, so away I went. For bathing we cushion the bottom of the tub with the biggest towel we’ve got, and use further towels to provide head and neck support. I filled the tub with water, and then as carefully and as gently as I could, lifted Adam up and into position. </p> <p>And there he lay. Relaxed and content, enjoying the warm soapy water. When the water was no longer warm, but Adam wasn’t yet ready to come out, I refilled the tub with him still in it. After 40 or 50 minutes I lifted his fragile little frame out of the water and onto a chair, wrapped him towels until he was completely covered up, and left him to dry in the warmth of the bathroom.</p> <p>“Dad, look at my hands, they’re like prawns,” he said, opening his palms towards me.</p></div> <p>“I think you mean prunes, son. And yes, they do.”</p> <p>Clean pyjamas, clean bed sheet, I returned him to our bedroom where he settled back down to his iPad. Normal service resumed.</p> <p>On Sunday our plans for the day comprised dropping Jessica off at school at 12.30, driving Jake to friends at 1.15 so he could get a lift to his football tournament, and me possibly driving over later to watch him play. The only ‘plans’ we ever have regarding Adam revolve around transfusions on Mondays and Thursdays.</p> <p>He woke sometime after midday. “Dad, where is Jessica?” he asked.</p> <p>“She’s gone to the school fair.”</p> <p>“What time did it start?”</p> <p>“It started at 12.30, Adam.”</p> <p>“Dad, I need to get there as soon as possible.”</p> <p>This was even more unexpected than his request for a bath the previous day. We were not at all prepared. He’d had nothing to drink, no food, no medications, he wasn’t dressed; Jake still needing dropping off.</p>
<p>
"I want to get there for the sweetie tombola," he said, struggling with my help to sit himself up into a position from which I could get him dressed. The last time he wore clothes other than pyjamas? I can't remember. Days tend to blend into each other, to be honest, and I don't remember very much of anything.
</p>
<p>
By the time we were ready to leave the clock had ticked round to 1.30. In the car as we approached school I told Adam not to get upset if there were was nothing left on the on the tombola stalls as they were always the most popular. "I'm sorry Dad, but I will get upset," he said, "That's the only reason I wanted to come." I got Adam out of the car, transferred him into his pushchair, covered him with a blanket, and off we went.
</p>
<p>
As we entered the playground and saw the two empty tables it was apparent this was not going to be the happy outing for Adam that I so desperately wanted it to be. The only thing he really wanted to do and it wasn't going to happen. Sure we wandered around, he spent a little money elsewhere, but he didn't enjoy it very much. At one point he even pulled the blanket up over his head and had a little cry because he'd missed out. At that point I just felt utterly useless, and completely full of hate about everything.
</p>
<p>
For those people who came and said hello during the brief time we were there, I say two things. Firstly, thank you. I don't like conversation, but neither is it nice to be avoided (not that anybody obviously did that). Kind of makes things awkward, doesn't it? I know how we must have looked, and making a point of coming and speaking to us wasn't the easy option. Secondly, my ignorance and general demeanour wasn't a result of us being there, it wasn't a consequence of seeing Adam's schoolmates running around having fun whilst he no longer retains the ability to walk, it wasn't heartbreak over the situation we find ourselves in. No, it was none of these things. Instead, it was all down to the bloody tombola having finished before we got there.
</p>
<p>
For his part Adam didn't dwell on things. We didn't stay long before he wanted to return home, and he hasn't mentioned it more than once or twice since. For my own part I was in an awful mood for the rest of the day, and most of the next. Something that Adam had <em>wanted</em> to do, something that Adam had <em>attempted</em> to do, something that Adam had <em>failed</em> to do — but not because of a lack of anything on his part, but simply through circumstances. That was all I was consumed with, and I was so full of anger and hatred about it.
</p>
<p>
But I've gotten over it now. It's not so much that I've let the anger go, more that I've put it back in the box along with everything else.
</p>
<p>
Because after all, it's only a tombola … right?
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com4tag:blogger.com,1999:blog-5356602794377389177.post-45836850008876049592013-06-06T19:33:00.001+01:002013-06-13T00:12:55.000+01:00Another update ...<div style="color:#333333;text-align: justify;">
<p>
It occurred to me this morning that it's been quite a while since I updated. And whilst I did say I'd only update when I have something to say, and even though I have very little 'new' information to impart, I'm updating anyway because I feel like it.
</p>
<p>
Most of the previous post was written on our immediate return to England, with some subsequent updates to take care of developments in the intervening period before I pushed it out as a public post. The time in-between was spent informing those whom I didn't want learning the devastating news by reading about it on here. I also had to choose my moment to talk to Jake and Jess. Being completely frank, when I wrote that post I was utterly convinced that the next would be the last.
</p>
<p>
Whilst Adam has a growing list of issues, and it's clear to see that his disease continues on it's relentless path, the progression has been slower, and the deterioration less dramatic, than we had feared it would be. He is comfortable and has been, for the most part, without pain. For this we are ever thankful. The chest drain was removed, and we've since had no further issues with fluid accumulation in his lungs. Again this was not something that was envisaged when we transitioned to palliative care, either by ourselves or any or Adam's doctors.
</p>
<p>
Although Adam is really not up to doing a great deal now he did manage a few days out some weeks ago, including a very special trip to the Harry Potter Studio Tour arranged for us by <a href="http://www.raysofsunshine.co.uk">Rays of Sunshine Children's Charity</a>. We all went along as a family, and had a lovely time. And as an extra special treat we got to hang out with Mr Draco Malfoy himself!
</p>
<p>
When we flew back from the US we did so with a 28-day supply of the drug combination that Adam had been on, minus the dasatinib that we thought might be contributing to his pleural effusions. Which left a decision to be made when the supply was exhausted. In the end we came to the conclusion that whilst Adam was comfortable, and not in pain, we wanted to continue things just as they were. Whilst withdrawing one or more of the drugs may have made no difference whatsoever, if we did so and Adam's condition changed dramatically we'd always be left wondering whether it was precipitated by our actions. Any actual cause-and-effect could never be known of course, but that wasn't a position I wanted to find myself in.
</p>
<p>
Having left it late to come to such a conclusion the only option was for me to make the 8,000 mile round-trip to Michigan to collect another 28-day supply, leaving home at 8am on Saturday and returning at 9.30am on Monday. And even then, it was only down to the tremendous support from the staff at Helen DeVos, and Julie and Craig in particular, that enabled it all to work out on a weekend when the pharmacy wasn't even open.
</p>
<p>
Because of our prevaricating about whether or not to continue, Adam was off two of his drugs for a week, and last Monday and Tuesday experienced worsening, debilitating, pain. We increased his pain-relief patch, but that only brought other problems. A week later, and back on all three drugs, he is now comfortable once more. His pain receded and we backed off his pain relief to the level it was before, and where it has been ever since we returned from the U.S.
</p>
<p>
And so that's where we're at, continuing to live day-by-day. Adam has a platelet transfusion on Mondays, blood and platelet transfusions on Thursdays, and we manage symptoms as best we are able in the meantime. We have a fantastic community team supporting us, and the out-reach team from the Marsden are available at all times, day and night. So far we have not spent any time under hospice care, preferring instead to look after Adam at home. Which is what we will continue to do for as long as it remains possible ... please continue to keep him in your thoughts and in your prayers.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com1tag:blogger.com,1999:blog-5356602794377389177.post-21543125152864702922013-05-10T13:02:00.001+01:002013-06-13T00:13:17.924+01:00An update ...<div style="color:#333333;text-align: justify;">
<p>
After four years, though it seems like longer still, the final stage of our journey has begun. We have left America for the last time, our principle task now to make Adam as comfortable, and free from pain, as possible.
</p>
<p>
We haven't told Adam what the future holds, and neither do we intend to; for what purpose would it serve except to add mental stress and anguish on top of the physical pain? Jake and Jessica do know -- a conversation like no other I have ever had, or ever want to have again -- but it was necessary to be honest with them. For their sakes, please be sensitive with any comments.
</p>
<p>
Adam remains the same as ever. He reminisces about what he used to do when he wasn't like he is now. He talks about what he's going to do when he's better. He informs me that we can buy some more sticky velcro so his replica WWE championship belts still fit him when he's bigger. He asks me if he can have a pocket tool with scissors, and bottle opener, and screwdriver, when he's older? He wonders if the cricket bat we bought him last summer will still be big enough for him this year? Out of the mouth of a child, an embodiment of innocence even now despite everything he's been forced to endure. And they cut through my heart like a knife.
</p>
<p>
Just over a fortnight ago, on Tuesday morning, Adam went into theatre just after 9am to have a tube inserted into his chest, and 1.5 litres of fluid removed from his right lung. By 4:30pm he was in the car, connected to a 4ft hose into a chest drain collection kit, and hooked up to a portable oxygen compressor, on his way to Detroit airport for the flight home. Not the standard discharge process after such a procedure, but there was genuine concern that if we didn't get Adam home as soon as possible, he might not be able to fly. He was retaining large amounts of fluid throughout his body, and in the days prior to our return his output had reduced to practically nothing despite the repeated use of strong diuretics.
</p>
<p>
A huge thank you is due to everyone at Helen DeVos Children's Hospital for pulling out all the stops to get Adam home safely. And also to the cabin crew on our Delta flight from Detroit to Heathrow, who were helpful, considerate and patient with us throughout. I'm still not entirely sure how we made it back so (relatively) uneventfully, but we did.
</p>
<p>
Since returning to Epsom we've been to the hospitals we needed to go to, talked to the people we needed to talk to, and set in motion the things we needed to set in motion. We have access to the 24-hour symptom management team at the Royal Marsden, our community team are also able to provide round-the-clock cover when we need it, and we've been referred to the Shooting Star CHASE hospice in Guildford. Now we'll just take life one day at a time.
</p>
<p>
For the moment Adam is reasonably well in himself; he is comfortable and has even been back playing on the xbox a little -- something he'd shown very little interest in for many many weeks. Simply being home has been a huge fillip for him. He has a whole list of things he wants to do, places he wants to go, and things he wants to buy. Whether he's well enough to do any of them on any given day is another matter though. His fluid retention has resolved -- which two weeks ago we had seriously doubted it would, suggesting the immediate cause, at least in part, was a side-effect of the medications he'd been on.
</p>
<p>
So here we are. And it's turned out to be of no consequence how long I have known it would come to this. It's mattered not how long I have spent trying to prepare myself for it. I was not, and am not, prepared. Nothing could have prepared me; for how difficult, and painful, and unfathomable, the reality is.
</p>
<p>
We are now going to deal with things privately, in our own way. I'm not intending to update regularly, either here or elsewhere, it's just not me. Instead I will post as and when I feel I have something to say. In the meantime please keep my little boy, and his bigger brother and sister, in your thoughts and in your prayers.
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com18tag:blogger.com,1999:blog-5356602794377389177.post-78480523916667376782013-04-13T15:06:00.001+01:002013-04-13T15:06:01.845+01:00More problems ...<div style="color:#333333;text-align: justify;">
<p>
Made it safely home with Jake & Jessica. Now got to decide when to fly back out again — probably be when I have just started getting over the jet-lag!
</p>
<p>
For a few days there's been a noticeable 'stutter' in Adam's breathing. When he exhales it's not a continuous motion, but rather he stops part way through and then resumes. I'd asked him about it a day or so ago and he said he was fine, as he does. When I continued to ask him questions such as 'Does your chest feel tight at all when you breath in and out?' he became rather exasperated, as he does, and told me 'NO. I ALREADY TOLD YOU IT'S FINE. NOW STOP ASKING ME QUESTIONS!"
</p>
<p>
On Thursday night, after I'd left, he developed a cough, and Alison noticed his breathing was not quite normal. Of course I hadn't discussed anything with her (sorry Al) so she asked Adam all the same questions that I did, and got the same responses.
</p>
<p>
In clinic on Thursday morning Adam's O2 saturation was 94%, which isn't terrible but it is a little on the low side; this can be caused by the finger sensor not being left on long enough, or needing some slight readjustment. Oftentimes simply putting the sensor on a different digit is sufficient to elicit a higher reading. On Friday morning it was 94% again. When Dr Sholler listened to Adam's chest she could hear he was a little constricted, and so ordered a chest x-ray which took place shortly afterwards.
</p>
<p>
It turns out Adam has some fluid on both lungs. The cause is thought to be one of the medications he's on (dasatanib) as it's a known side-effect. Fluid retention probably also goes some way to explaining the weight gain that Adam's experienced (although I'm sure some of that is also <em>real</em> as he has been eating a little better since we've been stateside).
</p>
<p>
Of course it's not terrific news, but at the same time it's good that the x-ray showed up the problem, and that there's a likely cause. We've stopped dasatanib (and thalidomide — a different story, read on for that one) for the weekend, and Adam's had a diuretic to flush out excess fluid. Thalidomide we stopped because Adam developed hives on Thursday night after taking it. We've increased the gabapentin, and the immediate plan/hope is to restart everything early next week. Of course we don't <em>know</em> at this stage that the problem with Adam's lungs is definitely dasatanib — we will only be able to surmise that if it resolves now we've held it.
</p>
<p>
Going forward the plan/hope is that this new therapy combination will be having some positive impact on Adam's disease, and he can continue on it by managing the adverse side-effects as they arise and giving him breaks off-therapy when necessary. On Monday or Tuesday of next week we'll have some indication of whether or not Adam will be able to return home for a few weeks to continue therapy. Clearly a lot is going on right now, and the situation is always going to be somewhat fluid. But we're keeping our fingers crossed that he'll be able to come back to the UK for two or three weeks before flying out again for scans ...
</p>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com1tag:blogger.com,1999:blog-5356602794377389177.post-82952755747127874582013-04-09T23:04:00.001+01:002013-04-13T13:34:35.004+01:00Treatment stops, treatment starts again ...<div>
<div style="float:left; margin-right:1.5em;">
<img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh4.ggpht.com/-qE2BgB61AA0/UWSQhObjRSI/AAAAAAAACmA/gzwI8snvyXk/IMG_0020.JPG?imgmax=800" alt="IMG 0020" title="IMG_0020.JPG" border="0" width="300" height="300" />
</div>
<div style="color:#333333;text-align: justify;">
<p>
So. It was a Thursday when I posted the last updated 'Treatment begins again …'. On Friday morning Adam woke with an excruciating burning pain in his upper back -- just below his right shoulder blade. We gave him a hefty dose of pain meds and as he slept I called his doctor, as this was clearly not one of the usual aches and pains Adam suffers from now. He'd actually started complaining about it the day before, but at that point we'd thought it was more of the same. But on Friday morning, both from how he described it and how it affected him, it clearly was not.
</p>
<p>
Fortunately, Dr Sholler was around on Friday; she said to see how he was when he woke up and if the problem persisted to take him up to clinic to be assessed. He woke after lunch and if anything the pain had worsened. He could no longer bear anything to touch his skin in that area, and when he moved the intense burning sensation would cause him to scream out in pain. It was a harrowing and horrifying sound; full-throated screams of pain, as if an imaginary hand was pressing scalding hot coals against Adam's back.
</p>
<p>
A second call to Dr Sholler and we got Adam in his pushchair and off to the hospital, shirtless, a blanket for warmth, strategically positioned so nothing was touching his back. At this point neither Alison nor I had any idea what was going on; this was new to us. When we got to clinic they were waiting for us to arrive, a quick set of vitals, and straight into an exam room. Ten minutes later Dr Sholler was on the scene to assess Adam. Verdict was neuropathy caused by the new medications -- most likely the Thalidomide even though it was only one week at the lowest dose, one-third the final target dose. Only option was to stop all therapy and wait for symptoms to abate. As well as the back pain, Adam was also experiencing numbness in the right side of his lip and chin.
</p>
<p>
We started Adam on gabapentin for ongoing neuropathic pain, and managed the immediate pain with opiates. The balance (as always) to be aggressive enough to keep Adam comfortable, but also for him to be awake and alert sufficiently often for us to get food and drink into him. As the weekend wore on Adam's pain subsided and the intervals between doses of pain medication widened. However, at the same time swelling appeared in Adam's lip, chin, and above his right eye. On one hand you know it's <em>almost certainly</em> all part of the same reaction. And on the other you cannot help but worry that this is something else -- something even more sinister.
</p>
<p>
By Monday Adam was sufficiently better that we restarted two of his targeted therapy drugs, Thalidomide we held off until Thursday. He's been back on the three-drug regimen (albeit still at the lowest dose of thalidomide) for 6 days now. There hasn't been another severe reaction yet, but at various times he has complained of numbness, the palms of his hands feeling hot, and his leg feeling 'weird'. I can only guess that the gabapentin is masking the worst of the neuropathy, but it still doesn't bode for the chances of Adam continuing long term on this drug, and I certainly can't see us dose escalating. We may need an alternative plan.
</p>
<p>
Jake & Jess flew out to Detroit last Tuesday by themselves, looked after by our friends at Delta Airlines. It's been great having them out here, although it's not been your typical Easter holiday vacation for the pair of them. We rented an out-of-season holiday house in Holland, Michigan next to Lake Macatawa where we've all been staying. It's a 45 minute drive to the hospital in Grand Rapids, but it's worked out pretty well for us so far. Tomorrow I am flying back home with them ready for the start of school next week, and I'll fly back out in a few days. Looking after Adam, making him comfortable, getting medications down him, ensuring that he drinks enough, getting him to eat regularly, is a full-time job. Day after day, it is, quite simply, relentless. But that's where we are, and that's how it is. It requires both of us to be able to do what we need to do, and so I'll be back out here as soon as I can. Except for parents who have been in this situation before us it's probably difficult to understand just how hard this all is. It probably even sounds a little pathetic requiring two of us in order to cope -- I can only say believe me, it's not.
</p>
<p>
We've been fortunate that there is a large aquatic centre ten minutes drive from where we're staying, complete with a 90° therapy pool. We've been in twice, the second time, on Saturday, Adam had an absolute blast. Jake and Jess came in too. We played with a beach ball -- throwing, pushing, heading -- and only got told off once for being a little too boisterous. It's been a long time since Adam has laughed and had so much fun. We'd probably been in the pool for in excess of half-an-hour, and there was only five minutes of the session left when Adam brought things to an abrupt end by deciding to perform a forward roll and getting water stuck up his nose. The main pool at the centre also has a splash zone with inflatables, a zip wire, and diving boards so after spending time in the therapy pool Jake & Jess have been going in there whilst Adam watches from the sidelines wrapped up in his towels.
</p>
<p>
On Sunday Adam ached all over; his back and both legs, shoulders. The after-effects of the previous day's exertions. He needs regular exercise, but gentle exercise, and so we will definitely keep on at the swimming, even though Adam might not always be so keen when he's not feeling as good as he was on Saturday. Sometimes he needs bullying into doing things, when his general malaise would rather he laid on the bed and watched his laptop. Sometimes he tells me he hates me, and calls me mean, but it's more than outweighed by the reward of seeing him in the pool and <em>doing something positive</em>.
</p>
<p>
As much as I hate to admit it, we are started to rack up some hefty medical expenses. With Adam's inpatient stay at the start of our trip, a monthly drugs bill of around $25,000, plus all the clinic visits, biopsies, tests, etc. I know that costs are escalating. So, if there are any runners out there looking for a cause, or people wanting to do something else to help Adam then please get in touch with the team at the NB Alliance -- <a href="http://www.childrenscancer.org.uk/contact.php">http://www.childrenscancer.org.uk/contact.php</a>.
</p>
</div>
</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-55296721145643714852013-03-28T23:46:00.001+00:002013-04-11T03:00:50.542+01:00Treatment begins again ...<div>
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<img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh6.ggpht.com/-_-8ml1iFNf8/UVTE_PTt0NI/AAAAAAAAClY/-mBqqIav1mc/IMG_0019.JPG?imgmax=800" alt="IMG 0019" title="IMG_0019.JPG" border="0" width="300" height="300" />
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<p>
Quite remarkably, given that Adam developed a potentially life-threatening infection on our first day in Grand Rapids, we are just finishing week one of his new treatment combination on the <a href="http://clinicaltrials.gov/ct2/show/NCT01802567">molecular-guided therapy trial</a> that we've enrolled him on. Clearly we could have done without <em>Klebsiella Pneumoniae</em> rearing it's big, fat, ugly, head but to think we haven't lost a single day time-wise as a result is almost beyond belief.
</p>
<p>
With Craig doing his sterling work we got out of the hospital on the 15th with antibiotics and supplies to do Adam's infusions at home (or in our case Renucci House) until Tuesday night -- making a total course of 10 days IV ertapenem. His white blood cell and neutrophil counts were on the up, a good sign of his body's growing ability to fight the infection itself, though still someway short of where they ideally needed to be. And so began the daily routine; 7am antibiotics out of the fridge, 8am flush, 30-minute infusion, flush, heplock; 7pm antibiotics out the fridge, 8pm …
</p>
<p>
All went without a hitch; my first test in home nursing and I passed with flying colours. Although I must confess, after the best part of four years watching nurse after nurse pushing stuff into Adam's veins, the very first time I started applying pressure to the syringe it did feel just a little bit odd to be doing it myself.
</p>
<p>
We'd arranged to have Adam's blood counts rechecked on Monday, having given him a G-CSF shot on Saturday and skipped Sunday. As we'd hoped, his counts had continued to improve, and his neutrophils at 3,000 were now right where we wanted them to be. None of his repeat blood cultures had come back positive for infection. His sodium, potassium, albumin, and creatinine levels, which had been all over the place during the previous week as the stress of the infection took it's toll, were back within normal ranges.
The whole situation was beginning to look brighter.
</p>
<p>
The last antibiotic went in on Tuesday evening and on Wednesday morning we took Adam up to clinic to have his port deaccessed -- blessed relief for the little boy who'd been accessed for 12 days straight except for a couple of hours between line changes. As Adam has a port now (as opposed to a hickman) he doesn't always have a line attached -- when he does that's referred to as being <em>accessed</em>. Otherwise he just has the port site on his side under the skin where the line into his vein is channeled up to. His movement is restricted when he's accessed, and he finds it difficult to sleep lying on his right side.
</p>
<p>
We saw Dr Sholler at clinic and she told us the tumour analysis was going well -- the genomics report should be available on Thursday with a view to resuming treatment on Friday.
</p>
<p>
We returned back to Renucci House, and after he'd had a couple of hours sleep during the course of Wednesday afternoon I checked Adam's temperature. He had been snuggled under the duvet -- we brought his own duvet and pillow out with us this time for added comfort -- and he felt a little hot. 38.6°. Shit. Or worse.
</p>
<p>
We don't generally panic any more, we've been doing this stuff far too long for that. But I can tell you -- this was worrisome. Having been warned that the infection Adam acquired was a particularly nasty one, having been told several times that it has a habit of coming back even after antibiotics, and having listened to the senior doctor on the ward saying he <em>hoped</em> Adam would recover, who wouldn't be worried? We pulled his duvet back and over the next 5 or 6 hours watched nervously as his temperature fluctuated around 38° -- 38.1°, 37.8°, 38.0°, 38.1°, 37.9°, 37.9°. Alison had packed the overnight suitcase, and we were all ready to make the call to be readmitted to the hospital. Another reading over 38.5° and that was it; back to the hospital, back on antibiotics, unable to start treatment on Friday -- and that was supposing the infection wasn't even back. If it was, if the 10 days of antibiotics and Adam's recovering immunity had failed to deal with it, what then? I decided I wasn't even going to bother going to bed. At 01:00 Adam's temperature fell to 37.4°, followed by 37.0° at 01:30, and 37.2° at 02:00. And at that point I breathed a massive sigh of relief and called it a night.
</p>
<p>
When Adam woke on Thursday his temperature was still normal, where it remained throughout the course of the morning and afternoon. The evening followed a similar pattern to the night before; temperature rising, though this time not quite as high, and for not quite as long. Whilst staying vigilant, and checking regularly, with the benefit of the previous 24 hours we weren't quite as worried this time. On Friday morning Adam's temperature was again perfectly normal, and we've not had a repeat episode since. I have no idea what the cause was, I'm just thankful it wasn't worse, and it didn't lead to anything.
</p>
<p>
On Friday we met Dr Sholler to discuss the new treatment plan. Adam needed a blood transfusion, and it turned into a long day in clinic as a hastily arranged electrocardiograph and echocardiogram were required to monitor potential side-effects of the new targeted combination therapy; thalidomide, dasatanib, and pravastatin. These drugs, amongst others, scored highly on Adam's genomics report and this particular combination was then selected by a panel of oncologists based on Adam's individual circumstances, history, etc.
</p>
<p>
Each <em>cycle</em> of treatment consists of 28 consecutive days of these three oral drugs, and the first cycle must be completed at the study hospital. Which means Adam will be out in Grand Rapids until mid to late April at least. We always expected this, the only variables being whether Adam was going to be well enough to even enrol on the study in the first place, and after that whether each cycle would be 21, or 28, days in duration. The big shock came when we found out the cost; thalidomide in particular is crazy expensive. The cost of a 28-day supply of the drugs is around $25,000. We are ever thankful to have the NB Alliance supporting us, and Adam's Appeal funds to give Adam the opportunity to hopefully benefit from this new trial.
</p>
<p>
Adam has tolerated everything well so far; thalidomide has a sedative effect and so is taken just before bedtime, apart from that there are no other restrictions. He's been suffering from various aches and pains, including a recurrent and persistent one in his lower back, but we are managing things reasonably well. We have to balance effective pain relief against the inevitable consequence that he will sleep and therefore be unable to eat or drink anything. Eating in particular remains an issue, but he's maintaining his weight at the moment and realistically that is our goal at this stage.
</p>
<p>
We discussed physical therapy with Dr Sholler, to try and improve Adam's muscle strength, mobility, etc. She suggested aqua therapy, and with Adam being keen we went along to a pool on Wednesday to give it a go. Alison and I came out with the same very mixed emotions. Adam, bless him, tried his absolute hardest, and he was so keen to get in the water. It's been a long time since we've seen him like that -- he even tried swimming under water to play trick on his new therapist. Unfortunately the pool was just too cold, colder than it was supposed to be; for a little boy with zero body fat and incapable of vigorous movement he was shivering within minutes and we had to get out shortly thereafter. But we've not given up. Adam's is happy to try again so we are in the process of finding a different, warmer, pool that we can go to. Providing it works out, and his immunity remains high enough, this will hopefully become a regular activity.
</p>
<p>
With the Easter holidays here, Jake and Jess are going to fly out next week to be with us. They're being escorted to Heathrow by grandparents and then flying out by themselves. Either Alison or myself will be there to meet them at Detroit airport when they land. We've rented a place by Lake Michigan, and just hope Adam stays out of the hospital and well enough that we can make the most of the time we'll all have together. They are amazing children my eldest two, getting on with their lives as they have in spite of everything that has gone on with Adam over the years. I do miss them though. Jessica was just finishing infant school when Adam was diagnosed; she'll shortly be starting her final term at junior school. It sometimes feels like her growing up has completely passed me by.
</p>
<p>
This is a photo of Adam and Jessica taken just a few weeks before he was diagnosed in 2009 …
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<img style="display:block; margin-left:auto; margin-right:auto;" src="http://lh5.ggpht.com/-m4oHI9WsosA/UVT54U7XbCI/AAAAAAAAClw/qd1pBEVDe2c/Adam_Jess.jpg?imgmax=800" alt="Adam Jess" title="Adam_Jess.jpg" border="0" width="550" height="365" />
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</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com4tag:blogger.com,1999:blog-5356602794377389177.post-69868791952846847162013-03-15T23:25:00.001+00:002013-06-13T00:14:59.340+01:00A Week In The Life: Infections, Scans, Biopsies, Home Infusions ….<div>
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<img src="http://lh6.ggpht.com/-5FEhV-7zBUo/UUOt5TJRLmI/AAAAAAAACk0/68mffYbB3xg/IMG_0017.JPG?imgmax=800" alt="IMG 0017" title="IMG_0017.JPG" border="0" width="225" height="300" />
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<p>
Adam is still in the hospital. This is his eighth day of incarceration, each one costing a small fortune. He has remained afebrile since last Friday, and repeat blood cultures continue to come back negative for ESBL <em>Klebsiella Pneumoniae</em> bacteria. This is, of course, great news, but we regard it with caution. The infection he acquired is a particularly nasty one that can return even after treatment with antibiotics, and negative blood cultures do not necessary mean there is no bacteria remaining <em>anywhere</em> in Adam's body.
</p>
<p>
The name <em>Klebsiella Pneumoniae</em> suggests Adam has pneumonia, but he does not. He has bacteremia - the bacteria found its way into his bloodstream which is what makes it so dangerous, particularly in an immunocompromised patients such as Adam. All that said, things are heading in the right direction; no fevers, negative blood cultures, and Adam's white blood cell count (a measure of his body's ability to fight infections itself) has risen steadily with each passing day. Today it's 1.5, we want it to get to around 5. However, 1.5 is a lot better than the 0.03 that it was when he was first admitted.
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<p>
Looking back on the past week we actually got very lucky. Adam spiked a temperature on our first morning in Michigan, it could easily have been the day before at 30,000 ft over the middle of the Atlantic; the bacteria infection clearly responded to the broad-spectrum antibiotics which isn't always the case; and we had positive cultures and sensitivities back from the microbiology lab that allowed us to change to a targeted antibiotic within two days of admission to the hospital.
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<p>
Such is the fine line that we often walk in the world of paediatric oncology …
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<p>
One of the things I love about Dr Sholler is that she 'gets it' as far as what parents go through on this terrible journey. She didn't encourage us to come back to Grand Rapids, and she didn't discourage us either. She made it clear Adam would be welcomed back, but it was our decision to do what we felt was right. A few weeks ago Adam was in no position to come back out here, we wouldn't have even contemplated trying given where he was at in terms of pain and feeling generally awful. But then we managed to get on top of things, Adam became far more settled, and coming back out went from feeling like the wrong thing to <em>being</em> the right thing.
</p>
<p>
The plan for our visit was FDG-PET/CT on Monday, with bone marrow and lymph-node biopsy Tuesday for enrolment on the new molecular-guided therapy trial that opened here only last week. Ordinarily an infection of any sort will scupper any and all plans for therapy, but the team here got Adam prepared for Monday's scan and it went ahead as planned. He was still pretty wiped out, but apart from having to consume a contrast drink the scan doesn't require much else from Adam himself. Unsurprisingly he slept through the entirety of it.
</p>
<p>
Scan results showed progression. Of course that's horrible news, but it wasn't anything we weren't expecting. It says something when you're pleased that the scan <em>isn't as bad as you thought it would be.</em> There was an interval increase in intensity of the skeletal uptake, growth in the lymph nodes, all of which are now at least partially calcified, but no new areas of disease. It wasn't catastrophic, it wasn't 'get-back-on-a-plane-and-return-home-again' bad.
</p>
<p>
And so to Tuesday. If the PET/CT scan was looking shaky at one point, the prospect of bone marrow biopsies, and a long needle lymph node biopsy, on a child with an ESBL infection and zero neutrophils, might be expected to be a complete non-starter. The idea of enrolling on a clinical trial whilst getting treated as an inpatient equally so. But things are not quite the same with Dr Sholler. There are rules for sure, you cannot go on study with an active infection, period. But there is also flexibility, and a consideration of the big picture. There are competing risks, big and small, some more immediate that might warrant delay and others less immediate but that would increase with the passage of time; some lines that can't be crossed, and other boundaries that can pushed a little. How did <em>we</em> feel about going ahead despite the current situation, after all Adam was on strong antibiotics? Delaying biopsies beyond Tuesday/Wednesday would mean the analysis reports coming back a full week later, meaning another week before Adam could begin treatment even if he were well enough to sooner. Provided blood cultures taken Sunday morning remained negative 48-hours later on Tuesday morning (which they did) Adam <em>would</em> be eligible for the trial. For me it was a simple decision. The bigger question mark was whether the interventional radiologist would be prepared to perform the procedure given Adam's condition and blood counts; we left Dr Sholler to sort that one out. We had our answer when, during Monday evening, the nurse came in to say Adam would be getting platelets overnight in readiness for the following day.
</p>
<p>
Monday night was one of those horrible hospital nights. Machines beeping, interruptions, platelet transfusion, monitoring vitals, blood draw, monitoring vitals again; we didn't really get any settled sleep until 4am. And of course on the day Adam had to be nil-by-mouth he woke up complaining that he was hungry - something I'd not heard him say for weeks and weeks. From telling him he's got to eat and at times practically force feeding him, I'm now saying he can't have anything to eat until mid-afternoon! Well, I didn't actually say that, of course, I just told him he couldn't eat yet for a while. If you repeat that enough times over and over eventually you get to a point where you can say 'another half-an-hour and you can have something to eat and drink'.
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<p>
Adam was as grumpy as grumpy can be on Tuesday. He just gave off this look that said 'You'd better have a very good reason for talking to me … or don't.' Not many people did. He lacked sleep. He was hungry. He was apprehensive about what was coming, he knows how it feels afterwards. If he wants to be grumpy under such circumstances I figure that's his prerogative. The anaesthetist was very approachable and listened to us explain Adam's post-anaesthetic apoplexy after getting propofol. He was more than happy to use ketamine in the first instance, and only resort to propofol if Adam started to move - clearly being totally still is rather important whilst undergoing a needle biopsy that goes in through the back, down past the kidney and into a lymph node in the pelvic region. Everything went to plan, the team got what they needed and Adam returned to the recovery area in a spaced-out ketamine-induced sleep. Only a small amount of propofol was required, and thankfully Adam woke up slowly and without adverse effects (ketamine can cause waking nightmares). As an added bonus he took longer to wake up than usual, which was also helpful as he's not allowed anything to eat or drink for another two hours <em>after the procedure</em> - in case he suffers an internal bleed that requires emergency surgical intervention.
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<p>
Tuesday night was another rubbish night, but for a different reason. All the sleep Adam had during the day meant he wasn't able to settle down at his normal time. So on Wednesday he was grumpy as grumpy can be. Again. From lack of sleep, and a very sore back complete with three fresh new holes in it.
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<img src="http://lh6.ggpht.com/-3DOnfzgElbw/UUOt50RX6jI/AAAAAAAACk8/LpS76jgb1OQ/IMG_0018.JPG?imgmax=800" alt="IMG 0018" title="IMG_0018.JPG" border="0" width="225" height="300" />
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<p>
Since then Adam has gradually improved; the pain in his back from the biopsy sites has receded, he's had a couple of very good night's sleep, and he's been eating and drinking alright too. We don't have anything planned now in terms of treatments or procedures until after the analysis reports on Adam's biopsies come back next week. Which hopefully means we have a full week to get clear of this infection completely. In which case, rather miraculously, we will not have lost any time as a consequence of <em>Klebsiella Pneumoniae</em>.
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<p>
This afternoon we've been discharged back to the Renucci Hospitality House to continue Adam's antibiotic treatment as a home care patient. Tonight we have a nurse coming to us, to train me how to manage Adam's line and administer the twice daily infusions. Each dose is provided in a separate self-infusing portable pump that we will keep in a special fridge back at Renucci. We have a plan for next week in terms of going into clinic to check counts, have blood taken for repeat cultures, etc. But if this works out we're done with being an inpatient; it'll be me infusing, flushing and hep-locking for the next four days. How cool is that?
Adam's pain remains under control with the fentanyl patches we're using. It's our fervent hope it remains so, and we get through to the resumption of treatment without further setbacks. We are also realistic enough to know that with this disease not only does it not always work out that way, it doesn't often work out that way …
</p>
<p>
It wouldn't be right for me to finish this update with saying something about the care Adam has received in the week that he's been inpatient here at Helen DeVos Children's Hospital. I know I speak very highly of Dr Sholler, but across the board the doctors and nurses that have been looking after our little boy have been exemplary. There are a few annoying rules, but I can hardly blame the individuals that have to abide by them can I? And even then, we've been listened to and our wishes accommodated as much as has been possible. Nobody has broken the rules for us, but they may have been bent a little once or twice for Adam's benefit. And to me that's the only consideration. Always. It's not about me, or Alison. It's about making adjustments here or there, sometimes seemingly trivial or minor, that make Adam's life just that bit more comfortable. But never anything that exposes him to additional, or unnecessary, risks. And finally, extra special thanks to Craig … without whose efforts we'd still be in room 903 in the hospital, instead of room 306 in the hospitality house.
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</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com4tag:blogger.com,1999:blog-5356602794377389177.post-85152300914650224852013-03-10T20:47:00.001+00:002013-03-16T03:11:04.725+00:00Not great news ...<div style="color:#333333;text-indent: 3em; text-align: justify;">
<p>
Adam has a multi-antibiotic resistant (ESBL) form of <em>Klebsiella Pneumoniae</em>. We've changed to a completely different type of antibiotic that bacteria from Adam's blood culture displayed sensitivity to in the lab. Although the broad spectrum antibiotic he was on before has clearly had an immediate beneficial effect, if we continued on this path the bacteria would just up-regulate its resistance gene to overcome it.
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<p>
We are now under isolation control, and had a visit from the infectious diseases team earlier this morning. All staff entering Adam's room must be gloved and gowned, whilst Alison and I are not allowed to enter the communal areas of the ward. Moreover, Adam will need to be gowned and isolated whilst in the hospital for the next six months to a year. Now we know Adam prefers to have his own room whenever possible, but as Alison told him earlier this is a rather extreme way to go about it.
</p>
Adam's immune system remains very low; he is getting daily shots of G-CSF and it will be very important to see his white blood cell count improve over the coming days in order for him to fight off this infection as quickly as possible. We are still on track for a PET/CT scan tomorrow, but beyond that we don't yet know what impact this is going to have in terms of treatment. My instinct is a lot, but we'll see. It's anticipated that antibiotics will continue for the next ten to fourteen days. At present Adam remains reasonably well and has been afebrile since Friday evening, which is something at least.
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</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com0tag:blogger.com,1999:blog-5356602794377389177.post-11295093408060311612013-03-09T18:04:00.001+00:002013-06-13T00:15:32.710+01:00Back in the U.S.A. ...<div style="color:#333333;text-indent: 3em; text-align: justify;">
<p>
We are back in Grand Rapids.
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<p>
Adam had a reasonable week last week, generally free of pain and ok(ish). After a lot of back-and-forth we seem to have figured out the right combination of pain meds that he requires for now to keep him comfortable. So we put together a hastily arranged plan to fly back out to see Dr Sholler, re-evaluate Adam's disease, and discuss treatment options. The support we've received from Dr Sholler these past few weeks has made such a difference; we've spoken pretty much every other day including at weekends, and in between I'll get the occasional message asking how Adam's doing if we've not spoken for a while, or he was having a difficult time when last we talked. And it's not as if she isn't a <em>very</em> busy person.
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<p>
We've also received tremendous support from our community team - we would be lost without them, and from the symptom management team at the Royal Marsden. When we spoke to Adam's consultant at the Marsden a few weeks back she made it clear that making Adam comfortable was their primary objective, but also said she would support us in whatever it was we decided to do.
</p>
<p>
Having decided we wanted to take Adam back out to the U.S. provided he remained well enough, there were practical considerations that we needed to plan around. Adam is requiring blood once a week, and platelets twice a week at the moment. The combined effects of disease and treatment on his bone marrow. Last weekend, due to a very low platelet count, he had a slow but persistent nosebleed that blocked both nostrils with clotted blood that required us to take him up to Epsom Hospital at five in the morning. When eventually he cleared his nostrils after getting transfused the one side must have been about 8cm long; it was enormous. This episode obviously served to cause concern about the prospect of Adam spending 9 hours at 30,000 feet flying across the Atlantic.
</p>
<p>
Our plan was therefore to prepare Adam for the flight on Wednesday by giving him a blood transfusion, double platelet transfusion, a shot of G-CSF (Adam's neutrophils were now zero), 4mg of Dexamethasone (steroid), and changing his Fentanyl patches (pain relief). Our hope was we'd get all this done, and be able to settle him for a good night's sleep with a 6am start required on Thursday to catch our flight. Well, what a disaster Wednesday turned out to be.
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<p>
Tara came to do Adam's bloods at 10am, which set the wheels in motion. However, it wasn't until 5pm that Epsom were ready for us to go up there; not a great start as a late finish was now already guaranteed. By the time his blood was up it was nearly an hour later, and it was around 9pm by the time they'd finished. The first pool of platelets then went up. Now the first of the bad news; they only had sub-cutaneous (injection) G-CSF. Adam demands IV when he's already accessed, and he was adamant nobody was going to stick him with a needle. From bad to worse; the first pool of platelets finished and I'm now visited by the Registrar who apologises 'but only one bag of platelets were issued.' A second bag is being issued now by St George's, the driver is still there, and it'll be with us in 1-2 hours. So, I'm faced with taking Adam home without G-CSF and only one bag of platelets, or having him stay in the hospital until very late, and then waking him at the crack of dawn for a long day of travel. The nurse then comes in to say they've found some G-CSF that they can give IV, which made my mind up as we'd give that whilst waiting for the second pool of platelets. G-CSF done, I settle down in the chair to rest whilst Adam sleeps on the bed …
</p>
<p>
I'm woken at 11:45pm by a knock on the door and a second doctor asks to speak to me outside. The one from earlier is still on the ward but I think they have decided to take it in turns to tell me things I'm not going to like hearing. She is very sorry, the platelets have arrived but they've issued the wrong ones. They are re-issuing the correct ones now but it'll be another two hours before they arrive.
</p>
<p>
I think my response was something along the lines of "What a complete and utter fuck-up." I didn't raise my voice though I hasten to add, but only because I was too drowsy from napping in the chair.
</p>
<p>
So my choices are (1) wait around to give Adam the second bag of platelets, take him home at 3am and then wake him up at 6am to go to the airport, or (2) have them de-access his port, take him home and travel on a single bag of platelets. I opted for (2); and I may not even have asked nicely for him to be de-accessed, I can't quite remember exactly. As I told them, the one time you really need things to go to plan, and for people to be on top of things ...
</p>
<p>
We get home past midnight, I put Adam straight to bed and finish my packing - eventually getting to bed myself just before 3am.
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<p>
Of course, we fully expected our trip on Thursday to be a complete and utter nightmare. Adam would be tired, irritable, grumpy, uncooperative, tearful, we'd struggle to get him to eat or drink anything. As it turned out it was nothing of the sort. Adam was great company from start to finish. He didn't sleep at all on the plane, just watched his iPad; then settled down in the car on the drive from Detroit airport.
</p>
<p>
Having been unable to secure a room in either Renucci Hospitality, or Ronald MacDonald (due to the last minute nature of it all), and needing somewhere to prepare food for Adam we booked a little cottage for 4 nights in Newaygo, around 45 minutes drive North of Grand Rapids. The plan was for a clinic visit on Friday, probably with a platelet transfusion to see us through the weekend, and then to have a quiet couple of days before getting down to business next week.
</p>
<p>
So much for that idea. On Friday morning Adam spiked a fever of 39° and is currently an inpatient on the 9th floor of Helen DeVos Children's Hospital with a confirmed gram-negative blood infection. He's on IV antibiotics, and although his fever has subsided since late yesterday, he's been experiencing rigours (uncontrollable shakes) so they are keeping a close watch on him. Gram-negative bacteria are more difficult to deal with than gram-positive, so it's not the best news to start our visit with. Plans for next week will depend on his continued response to antibiotics, and how his white blood cells respond to G-CSF. That little cottage in Newaygo has long since been forgotten - I packed up our stuff this morning and we've now got a room at the Renucci Hospitality House adjoining the hospital.
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birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com3tag:blogger.com,1999:blog-5356602794377389177.post-47194099788256692792013-02-26T18:08:00.001+00:002013-03-16T03:10:27.454+00:00Untitled<div style="color:#333333">
<p style="text-indent: 3em; text-align: justify;">
I am aware that it's been a while since I posted any updates. Truth is despite the fact that much has happened I haven't got very much to say. Truth is I don't want to write it down anymore. I'm living it, but I no longer feel like I need to be reading and writing it too.
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<p style="text-indent: 3em; text-align: justify;">
Adam has been having a tough time these past couple of weeks. We had stopped all treatments completely for ten days, but as of now he's back on some of them. We are looking at possibly getting back out to Grand Rapids sometime in the next fortnight. Possibly. Hopefully.
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<p style="text-indent: 3em; text-align: justify;">
Sorry for the brevity … please keep our little boy in your thoughts.
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</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com5tag:blogger.com,1999:blog-5356602794377389177.post-37793863747576416912013-02-10T22:14:00.001+00:002013-03-16T03:10:15.686+00:00Untitled<div style="color:#333333">
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It must be time that time again. Time for a brief update. And brief it will be.
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Adam is not doing so great since returning from Grand Rapids. Three repeat urine samples (I guess one of the 'missing' ones turned up) all tested positive for coliform infection (e-coli), and so Adam was started on intravenous antibiotic to treat it. He then began having issues with his bottom again, and it's subsequently transpired that he may well have a second abscess forming next to his anus; on the opposite side from the one that burst on Christmas Day, and which has now all but healed up. Considering what he went through with the last one I am quite surprised that he hasn't been at all traumatised by the thought of a repeat performance. I know I would be. He's now on another IV and third oral antibiotic for the suspected abscess (it's not well-enough formed yet for us to know that's definitely what it is), however antibiotics as we know from previous experience are seldom effective in dealing with such things. His blood counts are very low, and neutrophils are an unhealthy zero, making him very vulnerable and extremely susceptible to bacterial infection. He's been on G-CSF since Tuesday but it's had absolutely no effect. With all the IVs he's on at present he's having to be hooked up for 2-3 hours daily; yesterday and today that meant being up at the hospital, but whenever possible our wonderful community team are coming out to administer his meds. Eating continues to be a major problem and Adam has lost further weight. Reluctantly we have decided it is necessary for him to have a feeding tube so that we can support him nutritionally. The thought of a second impending abscess with all that will bring finally tipped the scales. He's not happy about the prospect, not happy at all, but he understands. He's had so many false starts over the last four months, a few good days when things looked to be on the up, followed by a few tough weeks when any progress he had made is wiped out … and more besides.
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</div>birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com6tag:blogger.com,1999:blog-5356602794377389177.post-32636861138167343492013-02-03T16:21:00.001+00:002013-02-03T16:42:28.725+00:00Home ...<div style="color:#333333">
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So Adam made it home on Monday … just. No sooner had I started to write the last post about the scan results and his planned return, than he began to experience aches in both arms and both legs. Wednesday (23rd) had been a good day; he'd been in clinic playing Beyblades with the nurse, care worker, and play specialist; he'd pushed his buggy all the way through the hospital and back to Renucci; he'd been downstairs playing fußball with his Mum; he'd been out in the snow, albeit not for very long as it was too darn cold.
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On Thursday his arms and legs had started aching. By Friday he couldn't move.
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He'd not had aches and pains like this at all whilst he'd been at home -- but then again he was mostly lying down because of the abscess. Whilst it's impossible to know precisely the cause the location, above both knees and in each upper arm, made us conclude it was exercise on Wednesday, coupled with effects of his disease, medications, and lack of activity over the last 3+ months. Because the flights home had been rescheduled for Monday rather than over the weekend, Friday's clinic visit was put back to Monday morning. Adam spent the whole of Friday in bed lying prone on his back; the aches in his arms preventing him from making even the slightest movements without Alison's help.
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Saturday the aches had improved slightly, he could use his arms to manoeuvre himself around in bed. However, he now had a temperature.
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Not so high as we had to take him to the Emergency Room (which is how paediatric oncology works over the weekend at many hospitals in America), but not far off. One reading would be 38.2° and twenty minutes later it would be 37.6°. When we had all the shenanigans with Adam's temperature in October last year, we invested in the same type of very accurate digital thermometer that they use at many of the hospitals -- Epsom, St George's, Helen de Vos. Oddly his temperature under one arm was consistently higher than under the other, it isn't normally. Eventually, Alison decided enough was enough and called the ER, expecting to be following that up by taking Adam in to have blood drawn from his central line and a peripheral vein, and start IV antibiotics. However, the on-call doctor decided the most appropriate course of action was to continue to monitor and observe. Adam's temperatures were not acute, his neutrophil count (indicating his natural ability to fight bacterial infections) was good, and he was asymptomatic. So Alison stopped packing the overnight case, and went back to keeping a regular check on Adam. As the day wore on, so the temperatures receded. Not heading straight up to the ER had proven to be the right call. Interestingly, had we been here in the UK, I guarantee the doctors would have wanted Adam admitted to Epsom Hospital for blood cultures and antibiotics.
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Sunday the aches and pains had continued to improve, but they were still very much present. The fevers had gone completely. Now the diarrhoea started.
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It didn't last too long, but it was sufficient to wipe Adam out. He was no longer eating and the chances of getting him home on Monday were looking rather slim.
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By Monday morning the aches were still there, improved from their peak but very much confining Adam to his bed and pushchair. He'd had no more fevers, and hadn't opened his bowels since the previous afternoon. Over the weekend Alison had alternated between starting to pack, and giving up at the seeming futility of packing when Adam was having all these problems, one after another, that would undoubtedly extend their stay further.
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It wasn't until late Monday morning, after a clinic visit, bloods and a top up of platelets that the decision was taken to make the trip home. It was relatively uneventful; Delta employees met Alison off the bus from car rental and escorted her through to check-in. Quite simply, without their help, there is no way she would have been able to transport four suitcases and a 9-year-old child confined to a pushchair herself. It's a fair walk from the shuttle bus drop-off outside the terminal building to the departure hall two floors up.
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Getting through security was 'interesting' (or in Alison's actual words -- a right palaver). Adam was unable to get out so had to be wheeled through in his buggy. Alison had to pat down said buggy everywhere with her hands and then have them scanned to detect for traces of banned substances; drugs? explosives? It took four security guards to ensure the pair of them were no threat to national security.
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Adam slept for the entire flight home, and he was even more wiped out when he got home. His sleep pattern was all over the place; he went to bed at 7:30pm, woke at 2am and spent the next 5 hours watching TV downstairs. He wasn't eating and what weight we had got back on him before he flew out to America had fallen off again, and more besides. A few days on and things are now back on more of an even keel. On Friday he slept until past midday, and ate a little lunch and tea. Things are slowly improving in the sleeping and eating department -- last night was his first proper full night's sleep since getting home. He's been playing XBox with Jake, that's always a sign he's feeling a bit brighter.
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We've started on the tweaked treatment regime, and on Wednesday he went up to the Royal Marsden to get his weekly shot of chemo. He's been having intermittent abdominal pain, that started quite low down and has moved further up his right side. Alison took a urine sample to the hospital on Wednesday, and it came back positive for infection (coliforms), but he's not really displaying any of the usual symptoms, and the sample was otherwise clear; in particular they would have expected to see white blood cells if it was a urine infection rather than a contaminated sample. So we did two repeat urine samples on Friday, and then two more on Saturday after the hospital lost the ones we did on Friday. And now we await to see what they show, we should have a result within 48 hours.
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birdnihttp://www.blogger.com/profile/18408301699350177358noreply@blogger.com3