Eileidh’s Legacy

Only two things will change the stats for the better: more research and greater awareness. This week’s LCFN bedtime story is all over both like a rash. Are you sitting comfortably?

Something has been bugging me for a wee while, and through not wanting to appear rude or awkward, I said nothing and did nothing. But sad as Eileidh’s passing has been, the only solution to prevent more Eileidh’s in the future is through research. Neuroblastoma is a hugely challenging disease for the medical specialists to understand, and understanding is the key building block in being able to find a cure. What we do know is that most cases aren’t diagnosed until high risk stage 4, and unless you’re lucky enough to be a stage 4 patient in Coronation Street, the odds aren’t stacked in your favour. I’m saying that because harsh as it sounds, fundraising for end of life is not going to help prevent children being diagnosed a generation from now. As Camelot like to say in promoting the other lottery, it could be you…

So I’ve made a conscious decision going forward: LCFN funding will be split two ways:

  • Neuroblastoma Australia
  • Solving Kids Cancer

I’ve listed them that way round for a reason. Neuroblastoma Australia support laboratory research: Solving Kids Cancer support clinical research. They are different but complementary.

Let me explain: I took these definitions straight off t’interweb:

  • Laboratory research is research that is conducted in a room or building equipped for scientific experimentation or research. Laboratory research attempts to investigate naturally occurring behaviors under controlled conditions with manipulated variables.
  • Clinical research is research that directly involves a particular person or group of people, or that uses materials from humans, such as their behavior or samples of their tissue.

Do you see the difference?

Do you see that one precedes the other?

Do you see that one feeds into the other?

In my eyes, they are complementary!!!

Our Aussie friends are doing the hard miles of trying stuff with cancerous cells and finding out what works (and what doesn’t) in laboratory conditions. They are also trying to find out how to personalise the medication so that one variant of cancer can be treated differently from another. If any of my old runners happen to be reading this, you’ll understand what I mean: this medication is configured for you and you alone. It is your personal programme designed to make you well again.

But once you’ve done the hard miles and got yourself a potential solution, you’ve got to test it. You cannae go straight from the laboratory to a 100% cure rate: you’ve got to find out how it works, study the results and feed that information back around the loop. You’ve heard of continuous improvement: this is continuous improvement at the sharp end: the life or death end.

I hope that you understand where I’m coming from. I don’t want to attach myself to another family’s cause, and repeat the cycle of survival by chance. I want to make a real difference at the front end of the disease: to kick neuroblastoma in the ass before it gets a chance to deliver its lethal payload. Oscar, Vanessa and Mackenzie may have got me started on this road but Eileidh is now my driving force.

LCFN will no longer be funding the nice fluffy stuff: it’s going solely after the bad boy. Neuroblastoma, I’m coming for you…

Then there’s research’s wee sibling: awareness…

Suppose that your GP practice has half a dozen doctors: we’ll call them Dr Osborne, Dr Fraser, Dr Williams, Dr Brown, Dr Talbut and Dr Kaye [there’s a pint, by the way, for the first person to correctly state where those names came from]. And suppose that due to the way that the rotas work, only three of them are on duty at the same time, and the make up of the mix varies from one day to the next. And because it’s a busy practice, you have to wait a week to get an appointment and take pot luck with who you get. And to keep things simple, let’s suppose this story starts in January.

Your three year old has got a fever. You manage to skip the waiting list and get an appointment the next day with Dr Osborne: “Hmm, wee Dennis appears to have a fever”. Medication duly prescribed and off you go.

A month later, Dennis is screaming with a sore head. Calpol hasn’t sorted it so off you go again: this time you get Dr Fraser: “Hmm, wee Dennis appears to have a headache”. Medication duly prescribed and off you go.

Two months down the road, you notice that wee Dennis is sweating a lot in the night for no apparent reason. But because you don’t want to be seen as a neurotic parent, you just let it pass.

Three months have gone by and wee Dennis is strangely tired all the time. He didn’t used to be like this, so you make another appointment: you get Dr Williams who notes your story and suggests a change of routine. Off you go again.

Six months after that first appointment with Dr Osborne, you notice that wee Dennis is walking funny and appears to have what looks like, to you, swollen joints. You phone up, you get an appointment and you get Dr Brown. Dr Brown’s on the mark: be like Dr Brown. He looks back through the list of your previous visits with Dennis and he’s concerned. He suggests a blood test.

I know this is just a made-up story but pick combinations of symptoms from the following list:

  • Easy bruising
  • Fever
  • Headache
  • Joint pain
  • Walking pain
  • Weight loss
  • Fatigue
  • Vision problems
  • Night sweats
  • Pale skin
  • Shortness of breath
  • Enlarged lymph nodes
  • Swelling in the abdomen

Recognising that your child has had a combination of several different symptoms over a shortish period of time is a cause for concern. In my story, Dr Brown was alert to the situation.

But…

Every child is different, and it may well be that a child presents hardly any symptoms at all until stage 4, when neuroblastoma is high risk.

But the message remains the same: the earlier that anything is diagnosed, the better are the chances of sorting it. If Dr Brown’s blood test came back positive, then awareness may have allowed a diagnosis at stage 2.

And so to the bike: we came back from holiday late on Tuesday afternoon, arriving home after a 250 mile drive in 28C of heat with no air con. It’s the way we roll: running a twelve year old motor in order to fund the LCFN bike(s). The last two weeks have yielded a grand total of 64 miles, and as any athlete will tell you, you lose it quickly once you stop (especially when you’ve been on the ale on holiday). So Tuesday at 7pm was a rude awakening. For a start I’m hardly ever out that late in the day, and that brings pressure: pressure to get home again in daylight. Rolling in at half nine is kinda strange, but it set the tempo.

Wednesday morning I was sore from the off, and my gammy thigh muscle seized up the moment I rolled out of bed: not a good sign. But hey, sod the pain, sod the toxic legs, let’s be having another 30 miles. I mentioned last week that 32,000 miles was coming up this weekend but this being LCFN, I wanted it a day early. I wanted it today. I love challenging my body and I love smashing the things that I’m not supposed to do. So now that’s four 30 milers on the bounce and apart from the now customary nagging pain in the front of my right leg, everything’s back to normal. Leaving aside #ForeverFive week before we went away, when basically my motivation was all over the place, over 90% of the last 100 days out have been 30 milers.

And this week has been fuelled by the memory of wee Eileidh. You get nothing in this life without giving yourself a chance. From a standing start on Tuesday evening, I’m now looking down the barrel of a wholly unexpected 200 mile week. Just 70 miles required from the weekend. Wet and windy? Watch me: I like a bit of rough.

But I can’t leave left this week without going back into the world of SNOMED because it dictates my life just now. The laptop went on holiday because I had an assignment due, and last night I sat down to do the online exam for Module C: Design of Terminology Services. It’s medical stuff and I’m a software guy. It’s hard going. I need to get through all six modules in order to guide my team through the upgrade from the old style of NHS IT to the brave new world of SNOMED. Every module builds on the last, every module is longer than the last, and every module must be passed with at least 70% or you’re off the course. Nothing like pressure then…

Last night’s exam was four hours. Twenty questions and a clock ticking down in the corner of the screen. The answers are all multi choice and you are usually asked to select one or more answers from a list of five. Quite often, an answer will have a selection of words to be chosen from a list to make up a correct sentence. Every time you make a correct selection, you score marks. But every time you select a wrong answer, you lose marks. And if you fail to select a right answer, you get penalised for that too. It’s an open book exam so the trick is have all your research laid out in front of you before you start.

At the end of those four hours (well, three and a bit actually), I just clicked on save and submit and hoped for the best: I had indeed done enough to make it into the next round. It starts imminently: it would have been today but I had real work to do. And a two and a half hour bike ride.

June tried to break me.

July tried too.

But I have a spirit…

And she got me through…

LCFN is Eileidh’s legacy.

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