We are on holiday in Lanzarote so I thought I'd do a blog post, partly because I have the time to do it and partly because I haven't updated in a few weeks.
Niamh's still doing well, six months off treatment and so far so good. Another clear chest X-ray last week set us up nicely for our holiday. Her consultant is more than happy with her progress, there are a few ongoing issues which continue to improve slowly, for the most part she's doing great considering its early days still in the grand scheme of remission, her nerve damage can take a good few years to get better and we still don't know the extent that they will improve to. Still, she is improving all the time which is good to see.
So, we're on holiday - such a shame to leave the snowy freezing UK but we forced ourselves onto the plane, what a bind it was. I managed to eventually get my iPod to play a few songs in succession after Conor finally settled playing a game on the iPad. So I rekindled my Rage Against The Machine playlist - obviously by the time we touched down I was suitably incandescent with anger at the establishment (that won't mean anything unless you like Rage Against The Machine) but all that changed as we stepped out into heat, sun, blue skies and warmth. We really couldn't have picked a better time of year to come on this occasion, watching the news and seeing how appalling the weather is back at home really makes me glad we're here.
So, it's all good apart from the hawk that rids the premises of pigeons. I don't like birds - particularly pigeons. I tip my cap to the hawk however he scares me witless. He's a handsome fella, just massive and a bit swoopy. Paul finds my fear of birds hilarious, he took great delight in the fact that there's a hawk roaming the skies here and also pointed out to me this morning that one of the evening's shows is entitled "Birds of Prey" - this worried me immensely and I was obviously bricking it. I have managed to curb my fear somewhat in recent times as I don't want the kids to develop the same fear so I can handle little birds and stationary pigeons ( until some toddler comes running at them to make them fly - why do they do that?) suffice to say, I was not relishing the prospect of that particular show. I have so far enjoyed a Michael Jackson show, acrobats, Argentinian dancing and various quiz type shows - all good. I thought perhaps that may have been the end of that good run. But it was ok, I sat at the back. Niamh and Conor enjoyed it and got their photo taken with some owls. One was massive, an eagle owl, which scared Niamh but Conor merely put the leather holder on his arm and held it for the pic. Brave boy - it wouldn't be me.
Another amusing holiday thing is that the entertainment team think Paul is called Nigel, which is a great source of amusement to us - except Paul. Niamh thinks Nigel is the disco king - Paul is not the disco king at all, he dances like a puppet on a string. Nigel has the moves like Jagger haha. I like my temporary husband/ holiday romance!
We are over halfway through the holiday now, the weather is lovely - a great tonic. It's not all plain sailing though, as ever. I'm often reminded of Niamh's after effects of treatment. She's fallen over a couple of times and hurt herself, often unable to get up alone so she gets really embarrassed trying to get on her feet again. Also she went and checked out the teenagers kids club here and was embarrassed yet again as I tried for ten minutes to explain her illness to the reps - having to mention her tumour always bothers her. She hates when I talk about it outside our home. She has also experienced a few other side effects out here that she has found unpleasant. As I say, she's making great yet slow progress but it's not all plain sailing and we are by no means out of the woods yet.
We have been talking about the fund too, the remainder of which we are eventually going to start donating to other families who need to go abroad for treatment. We aren't doing that quite yet though as Niamh is only 6months into her remission and it's very early days in the grand scheme of things so we'll hold onto it a little bit longer then offer discretionary donations to others who find themselves in our position. We think this is the best use for the remaining funds rather than starting a charity. That requires the kind of commitment that we don't feel we are able to offer at the moment. We still want to do charity fundraising, but that will be for localised charities, BCRT or Clic Sargent.
Our thoughts have also turned to planning our visit back to America later in the year for Niamh's follow up to her proton (a year on). We all can't wait to go back and see the fantastic team again. It'll be part medical part holiday. Conor and Niamh are looking forward to going back to Denny's for a couple of nice breakfasts. Paul wants to plan a little road trip out there and I'm just looking forward really to revisiting Jacksonville which was so good for us last year. I really miss the place and would live there if I could. I can't, of course, but the thought is there. I'll always revisit the place now and again, the memories are fantastic. I watched Niamh bloom out there, she lost her "chemo pallour" and got colour back in the cheeks, she gained so much strength with the outdoorsy lifestyle, her hair started growing back and she regained her cheekiness and wit (the old Niamh). She also got back her love for reading after being more or less unable to physically hold a book, let alone concentrate enough to read it for 7 months. Yes, my memories of Jax are fabulous - I owe that place everything really because the chemo in the UK didn't work for Niamh but the proton therapy in America zapped the tumour into oblivion. I can't wait to return. It goes it hour saying that the outdoors American lifestyle suited Conor too - he loved the place.
So, I'll sign off now and go and type in my password for Niamh to buy her fourth book on the Kindle in a week. The bookworm is back with a vengeance.