If LifeCycleForNeuroblastoma is to mirror the disease itself, as I previously said to myself that it would, then I’ve come to realise that there will be good days and bad days and that the journey is liable to lurch from one to other without notice or invitation. The good days will be full of optimism and sunshine, warmth and pleasure. In stark contrast, the bad days will be characterised by pain, by misery, by cold and by nagging self doubt. I’ve experienced many of the latter, most notably during the long winter months when I saw no daylight for a hundred days in a row, the so called hundred days of hell. Those days were perpetuated by surgery which left me wondering whether I would, and indeed could, come back as good as before. A thousand miles in May laid that ghost to rest.
I’ve been thinking that maybe one of the reasons why this good day/bad day scenario is so well suited to LifeCycle (or is it the other way round?) is because it’s happening in the West of Scotland, all too often a wretched place weatherwise with a climate that tests one’s resolve to breaking point: but fortunately, never beyond. Not yet anyway.
I’ve also come to realise that beating neuroblastoma itself is hugely demanding: of the child, of the family, and most certainly of medical science. I read this week that whereas childhood leukaemia carried an 85% mortality rate a generation ago, now the figures are reversed and up to 85% of children survive. Neuroblastoma has a long, long way to go to achieve numbers like that but it’s only through the dedication and desire of the medical profession to keep pushing back the barriers, aided and abetted by the families of the suffering, that such an outcome can be realised.
What of the other similarities and differences between the disease and the bike ride? Well for a start, each can be countered in a variety of ways. Neuroblastoma is a progressive disease, yet simultaneously aggressive. The bike journey is progressive in the sense that it accumulates miles, yet it too is aggressive if you attack the target in the manner that I choose to do most of the time. An alternative treatment is to drip feed smaller doses of a cocktail of drugs into a child, and this is often effective in halting the progression of spread. With hindsight, I liken this to the approach that Leona demands of me from time to time when my judgement is impaired by a demand for even greater effort. And against all of this, normal life has to go on: family, work, interests, both personal and joint, they all demand to be satisfied alongside this ongoing cocktail of early starts, late finishes and inevitable fatigue. I still don’t know how the parents of children with neuroblastoma manage that juggling act. My only experience is of being presented with a choice at 5am every morning. Stephen Knox once noted that in having this choice, it set me apart from the reality and it’s an interesting observation. However in the cold light of day, choosing to get on the bike every twelve hours is the very same in my mind as choosing treatment over the alternative.
I read earlier that the worst case scenario for a patient is (1) the chemo that we’ve been using is losing its efficacy (2) there are no other known therapies to try (3) we do not have a lot of time. I liken that scenario to the marketing and hence the fundraising of my time on the bike. I’ve tried the personal touch through social media and it is undoubtedly losing some impetus. I still cling on to the notion that there is a benefactor out there, perhaps a corporation, who would see mutual benefit in backing my adventure with hard cash. But time is running out. I have less than a year to go….
At the start of this week, I promised myself that I would write the blog on the plane coming home from America, where we’ve been on holiday. But the events of the early part of the week, most notably Princess Puddles being declared fit to travel to the US for specialised treatment to help prevent a recurrence of her neuroblastoma, coupled with some ideas that I had for musical interludes, meant that Wednesday night was spent with a beer or two and an over energetic mind: the Kids In America blog was the direct result and it duly saw the e-light of day in the early hours of yesterday morning.
But there are dark forces at work out there in the great unknown, and whilst this week’s blog was done and dusted 24 hours ago, something didn’t fit with just leaving it like that…
So as I’m writing this, I’m on a plane from Philadelphia to Glasgow. The original plan is reality unlike our original plane which was pulled from service with a technical fault twenty minutes before take off just we were about to begin boarding. We were subsequently diverted onto an incoming plane that had just just arrived from Amsterdam, leaving our carrier, US Airways, to very much make it up as they went along. Whether we get re-united with our luggage on arrival in Scotland remains to be seen as we haven’t seen it since New York and it will certainly have required a last minute transfer when the original 757 was pulled from service.
Why am I sharing this?
Because when we disembark from this flight in a little over four hours time, Princess Puddles will getting on: indeed Team Puddles comprises the whole family, including Gail’s dad who I gather has been assigned the role of taxi driver for the duration of the week long trip.
Eileidh’s visit to the States matters greatly because her life very much depends on it. The relapse rate from Stage 4 (advanced) neuroblastoma is high: around 80%. Without the specialised DFMO treatment that Eileidh will receive in America, the odds are stacked against her. It is the fear that all parents of children with the disease have to go through. If the child relapses and the disease returns, then it is almost always more aggressive than before and the outcome far less certain in terms of survival. I know with some certainty that Vanessa Riddle has overcome neuroblastoma twice and it is remiss of me not to know whether Mackenzie Furniss is a one time or a two time survivor. Right now, Princess Puddles is a one time survivor and everyone who worked so tirelessly on her behalf to get her Stateside hopes that she never has to face that battle a second time. That’s why this matters.
Before we boarded the flight, I kept one last appointment with Facebook in order to advise Gail of what was happening to her proposed schedule: 80 minutes late on takeoff is quite likely to have a knock on effect to the returning flight due out of Glasgow seven hours from now (and we are not even one third of the way over the Atlantic yet).
When I penned the midweek blog, Eileidh was the only child I knew of in Scotland fighting neuroblastoma. Now I also know of wee Hamish, aged two. The same Facebook session that reported the plane drama in Philly sadly brought the news that Hamish has become the latest Scottish youngster to receive the support of the NCCA. I felt impotent in the sense that I don’t know actually where in Scotland Hamish is fighting his corner but intend to make it my business to let his parents know that the LifeCycle Man is riding this journey alongside them. As I’ve said before on this journey, I might not be breaking the bank in terms of donations (currently heading north towards six grand) but I still think I’m doing a decent job on awareness.
There have been many positive blogs these past few weeks, driven on by a surfeit of miles and a desire to mark new boundaries in recognition of the effort. But this blog is not necessarily one of them.
This blog is a reflection of having met Scott at Solving Kids Cancer. Scott gave me a gift, a book that brain dumps the emotions of a parent through a series of emails, many written late at night whilst painfully tired. I read fifty pages of “You Can’t Let Cancer Ruin Your Day” on the beach on Monday. I read another hundred pages today. Scott told me that even though he had a copy of the book, he’d never read it: he didn’t need to. Leona once said that “I got it”. I now know that to be a partial truth. For now I have a completely different view from before. Remember where I came in, good day/bad day? Well that’s the reality. Except that you invariably get a surplus of one or the other depending on the spread and the outcome of the disease or in my case the machinations of the weather.
This is going to be a long road: and already I know that the good days of summer will all too quickly be replaced by the cold, dark days of winter: and the downright ugly days when basic survival is the only show in town:
That’s “The Good, The Bad and The Ugly” of this bike ride.