“Another Thursday night and I ain’t got no miles in
Another trip where I just got paid
Now how I wish I got someone to talk to
In a thoughtful way”
Adapted words from the great Sam Cooke, a guy so soulful that the King himself, Otis Redding, saw fit to cover some of his finest work and make it his own.
It’s been a week when I’ve been on the road from day one and I’ve done no miles on the bike. It promises to be the lowest weekly total in ages and to be honest I’ve been climbing the walls needing some serious exercise. Bring on tomorrow…
But in those words at the top of the show lies a theme: beautiful words penned by a great artist. And so it was that the idea for this week’s blog came from the other side of the world: Adelaide.
I’m sure that most people reading this will know the story by now: while Eileidh was still NED (No Evidence Of Disease), a friend five times removed (initially) through Social Media wrote a song about a kid battling cancer. Quite how you do that, and make it believable and sincere is beyond me but Amelie managed it. She captured the scene so brilliantly that nearly 22,000 people have liked the video on Facebook. 27,000 have seen it. Amelie is an artistic genius.
But it isn’t just Amelie. She carries with her an entourage of family and friends who are just clones and clonettes of her artistic trait. So collectively, their Facebook life reads like one big long partyfest of flower power, passion and love.
So I guess I shouldn’t have been surprised when I woke up to the following post early one morning this week: just remember as you’re reading this that Amelie and Eileidh have never actually met. This just came straight from her heart.
“Beautiful, beautiful Eileidh! Still inspiring me everyday. September is a special month for raising awareness about childhood cancer so please think of Eileidh and all the brave little ones that she represents, especially this month! Please share something, donate, or even just educate yourself so that you know the symptoms. Pop over to Eileidh’s page (managed by her amazing mummy, Gail) and see what Eileidh and her family have been doing lately – you could leave a message of support – Eileidhs Journey 🙂 Whatever you do, please spare a thought for these phenomenal people. They are going through, and surviving, more than most of us can ever imagine, and they still manage the kinds of smiles that could bring sunshine to a windowless room”.
I mean, how can you top that? Gail’s family have been supported by some amazing people these past two years, and I mean that in the sense that people have given them something to cling on to, something to brighten what must be a very dark and overpoweringly anxious existence. Amelie is right in there with the folk who have broken down the door and offered something spiritual. And right there behind her are her groupies. I blame her grandparents for her selfless commitment to the cause, but that’s another story in another blog, somewhere way back down the line: Frank Loves Joan.
Eileidh herself continues to be the most incredible brave warrior. The stories lurch from a few hours at home to a few days in HDU (High Dependency Unit) with a bit of normal ward life sandwiched in between the two for good measure. We see frowns, we see tears, we see boredom and we see mischief. But above all we see an acceptance that this is the way it is and that nothing is going to deflect her away from being herself and our Princess. I know that in order to be a real Princess, you’ve to be born to a monarch. Sod that: Puddles is as much a Princess as any that we’ve had in royal life these past few years. Here’s why (pinched from the urban dictionary):
A Princess is a noble young lady who carries herself with poise and dignity. Hands up everyone who’s seen Eileidh in her Love Rara outfits and who reckons she fits the bill.
A Princess listens attentively: Gail told Eileidh that Steve rides a bike.
And when she speaks, a Princess chooses her words carefully: “Look there’s a man on a bike! That must be Steve”.
Though she knows she isn’t perfect, a Princess possesses a strong sense of duty that comes with being who she is. Eileidh certainly knows who she is, and has a strong acceptance of it.
A Princess thinks of others: well doesn’t she, especially her mum, Cerys, Callum and her wee furry cats. Yup, tick that box.
A Princess believes and trusts. Eileidh has to: she’s no choice. Her life depends on it.
I love this one…
She doesn’t have to be in the spotlight because she already knows she’s a Princess.
A Princess is extraordinarily beneficient. Gentle, generous, compassionate, patient, good-natured and forgiving are all words to describe a Princess. Might have to play your joker on bits of that one, eh Gail?
A Princess doesn’t compete with a Prince. Just the opposite. She builds him up, and when he sees that he’s a hero in her eyes, it’s no surprise that he’s willing to suffer for her. He will go through anything just to keep an admiring Princess by his side. Eileidh, may I be your virtual bike prince?
And saving the best for last…
A Princess is a Princess regardless of her attire or her circumstances.
So there you have it, right there: confirmed. Puddles is a Princess.
My goodness there have been some sad late night posts from Gail this last wee while. I’ve seen Jane sniffling while she’s been reading some of them. But for every rock bottom, there’s also been an upside, a joyous revival that reminds you just how fast and just how far kids can bounce back. Except in Eileidh’s case (and Kian, and Zakky and all of the other wee warriors), it takes more than a couple of spoonfuls of Calpol to do the trick. That’s what makes them special: that’s what makes them warriors.
Now, before I finish this week, I want to share something with you. A couple of weeks ago, I told the story of how I had designed a software programme that finds disease. It works by having a clinical specialist define the symptoms by what the health professionals know as read codes. Then you go searching for those codes in combinations before analysing the results.
We know, because essentially it’s why we’re here, that most childhood cancers are not diagnosed until stage 4, by which time the treatment options are more complex and certainly more aggressive. So if a child is going to develop cancer some way down the road, wouldn’t it be good if you could make that diagnosis at stage 3, or even stage 2.
What if you were able to search for the known symptoms in clusters as a matter of course in primary care?
Do we know the common symptoms? We do.
Do I have a piece of software that can group those symptoms together? I do.
Has anyone ever tried it? I don’t know. I certainly haven’t. Yet.
This is brand new.
But this is September. This is child cancer awareness month…
I’m now home from my jaunt in Liverpool (five minutes ago) and the postman has been. He’s delivered the most beautifully wrapped present from Amelie: a copy of her new CD “About a Girl” and the bonus of its predecessor Frank Loves Joan.
We know who the girl is. She’s a Princess. It was the most gorgeous thing to come home to. I’m touched beyond words. And it’s all packaged in gold ribbon. Dare I even break the seal?
I suspect repeat play will be the order of the day for the remainder of the evening…
This LCFN story may yet finish very much as it started: fate sent me on this journey. It took away my job in engineering two years after I met a Princess: and in its place it gave me a new career in disease diagnostics. Eileidh’s Journey and LifeCycleForNeuroblastoma are more, much more than a couple of brand names for a special sort of pain. When you go through something as long and as demanding on yourself as we have, you emerge a different person on the other side.
She went in as a wee girl: but she came out the other side as a Princess…
Beautiful, beautiful Eileidh.
Ride2Cure Neuroblastoma 