The blog I never wanted to write is this one.
I know that just about everyone reading this will know the news by now, but when I nailed my sail to Eileidh’s ship a year ago, the outlook was promising. A significant period cancer free since the start of the clinical trial in Michigan was cut short when neuroblastoma returned in May of last year. To everyone who has followed Eileidh’s story, that was devastating news, and the months that followed were equally harrowing as we watched from afar while Gail relayed the ongoing story from Eileidh’s hospital bed. It became increasingly difficult to follow, not because Gail’s blog wasn’t detailed, but because poor Eileidh went to hell and back while she was fighting for her life.
But she prevailed, and before Christmas came the news that there were no neuroblastoma cells in her wee body at that time. Twice struck down and twice clear. Positive shoots going into spring.
But neuroblastoma is no normal disease. It’s the Japanese Knotweed of childhood cancers. You think you’ve got it beaten, then it just comes back for more, and stronger and more virulent than the last time.
And that’s what’s happened this week.
Eileidh is the strongest wee girl I know. She’s probably the strongest wee girl that any of us know. To beat this monster once, aged two was no mean feat. To beat it again aged four took immense courage, not just because of the toxicity of the treatment, but because the family knew what lay ahead when she set out on the road.
Now they must face the challenge a third time. To the best of my limited knowledge, neuroblastoma comes back stronger each time and becomes progressively more difficult to eradicate. Science is a wonderful thing but there comes a time when the drugs available to control the disease are limited in their number and their availability in any given situation.
Gail has said this week that the specialist view is that Eileidh’s cancer cannot be cured. But that isn’t to say that you don’t try. You never, ever give up hope while there’s something out there that you haven’t tried: and while time is on your side, except in Eileidh’s case, as this is round three, that might not be the case.
Gail is one amazingly strong mummy. I know how tired I get some Friday nights after I’ve been at work and on the bike and writing a blog is often the last thing on my mind. When Eileidh’s in treatment, Gail’s blog is a daily occurrence. The one at the end of chemo day 2 this week went out at 3am in the morning. I know because I woke at 5am and checked my phone to see what the time was and it was published two hours earlier. That means that after a full on day on the ward, Gail still had enough fuel left in her mental tank to keep us all updated. She was probably writing from 1am.
She deserves a medal. There should be special gongs for people like Gail who manage to keep it all together whilst all around, all semblance of normal life has been decimated.
And the blog’s so detailed. I’m sure at the end of all this, Gail herself will be so clued up on treatment options that there’s a support role somewhere in the system, whether that’s with Solving Kids Cancer as an outreach worker I don’t know, but there’s now so much knowledge in her head it’s got to be useful to someone in some capacity.
Even at this early stage, and we’re not out of winter yet, Gail Paterson is my nomination for Woman Of The Year.
In a moment of realism, Gail posted this yesterday “We have also discussed the possibility of crowd funding (along with but separately from fundraising) for a Bucket List for Eileidh. I know in my heart of hearts that time is limited with Eileidh & extremely precious so I want her to experience everything so we can pack a lifetime of memories into whatever time we have with her. I am waiting to find out if we are able to do both fundraising & crowd funding but it is looking hopeful so far. One of the first things for her bucket list, which I have been speaking to Eileidhs boyfriends mum about, is having a little ‘wedding’ for them, as he is determined that he is going to marry Eileidh (even pinching one of his mums rings to give to her ❤). I will keep you all updated & hopefully we can make a start on her bucket list soon, as logistics & time between treatments will most likely be an issue”.
I echo what Gail is feeling and believe too that the coming months must focus on the things that Eileidh would love to do, whether she was ill or not. Let’s make sure she gets them done and if that means further funding, then so be it.
Both Gail and I have a large stock of Eileidh’s Journey/LCFN wristbands in shocking pink (Eileidh’s favourite colour) on black and they are very, very attractive. I wear my Oscar band on one wrist and my Eileidh band on the other. They are both very special to me.
If you don’t already have one, you can get an EJ/LCFN wristband by donating £5.50 via Paypal to paypal.me/eileidhsjourney and putting your address in the message box that accompanies the transaction. We’ve got them in teenage and adult sizes.
But back to the Bucket List… what experiences would befit an inquisitive, energetic four (soon to be five) year old? I’m led to believe a visit from Daryl Dixon sits pretty high up on the list (and not just for Eileidh I wouldn’t mind guessing). Princesses and Superheroes are a necessity. Tommy Melly, are you receiving me? Superheroes mate: get that cape out the cupboard. Princesses? Does Anne count? Would she do it? Would she walk onto the ward at RACH on a kind of State visit? Needs sorted… Then there’s some dude called Tigger at Disneyland: apparently he didn’t sign Eileidh’s autograph book while she was over before Christmas and she hasn’t forgotten it. Tigger, yer being tugged. Who else? Do you think JK Rowling might fancy a shift, perhaps with a wizard or two? I’m thinking aloud here but it has to be done. We gotta get this sorted.
On the subject of superheroes visiting sick kids, did you see the pictures in the week of the Sunderland players visiting Bradley Lowery in hospital? Bradley is also fighting neuroblastoma and his prognosis is not dissimilar to Eileidh’s at the current time. He’s a mad Sunderland fan and has been a mascot at some of their games. Indeed, when Sunderland played at home to Everton earlier in the season, Everton donated £200K to Bradley’s fund before the match. Immense!
Well last night, this picture appeared on t’internet of Jermaine Defoe, striker extraordinaire, the guy who almost singlehandedly kept Sunderland in the top flight last season, looking the coolest of cool dudes, stretched out on Bradley’s hospital bed, with Bradders snuggled into him. It was a photo for all time. That’s what we want for Eileidh: we want a scrapbook of superhero visitors at her bedside.
Turning to the wheels, I cannae leave this week alone without a mention of yesterday and today on the cycling front. Whisper this quietly, no, quieter than that, but yesterday I took a day off. I have never, in 700 odd days, ever taken a day off by pure choice. But yesterday I did so. I didn’t feel too clever the day before, having woken up feeling a bit light headed. And my sore leg was giving me gip through the ride so I had a weak spot in my armament. Yesterday I woke with a thumping head and felt hot (even though the house was a tepid 16C once everyone had cleared off to work and school) so I did a Ron Hill and bottled it. Yeah, I probably could have gone out and ridden round the block but that’s not what I’m about. I like to do proper stuff, stuff that’s outside the comfort zone…
Which brought me to today: Jane was off and was busying herself with case studies in her quest to become a fully qualified Sports Massage Practitioner. She offered to counsel my sore leg before I went out and gladly accepted. It was a kind of pre-emptive strike ahead of the work that was to come. And to a degree it worked. For seventeen miles, I felt no pain, in spite of working the Ayrshire hills with more confidence that I’ve done for a good wee while. And even then, the twinges were short lived. I got another fifteen in after that. But now it’s sore again so before I go to bed tonight, it’s gonna be ultrasound: more ultrasound. Intense physio is the only thing that keeping me on the road right now but despite the day off, there are another ton plus miles in the bag since Monday: a result of sorts…
And in that ride today was a hill I’ve never cycled before: I’ve never done it because it scares the shit out of me. For the locals reading this, it’s the hill up to Lapwing Lodge from Shillford where the road from Uplawmoor crosses the Barrhead road. It’s a nasty, nasty wee climb. So why do it? Because it’s always been on my bucket list.
But my Bucket List isn’t a patch on Eileidh’s.
Ride2Cure Neuroblastoma 