Starlight Wish

The caravan’s finally finished and was officially opened by Starlight today. Daisy and her pals had a tea party to celebrate and they all helped add the finishing touches to the interior with transfers, stickers and more lights.  It’s a total success and has been fun to make happen for Daisy. Despite the pinkness it’s a vast improvement from when it arrived and we’re hoping she’ll share it; it’s very cosy! 

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August 24th

I’m aware now that blogging seems a bit pointless as there’s nothing medical to report but I now get texts, messages and emails asking for updates so for those of you who want to keep track of how Daisy’s doing  I’ve decided to carry on until the 12 month mark when we sincerely hope we’ll have a second all clear scan under our belt and she’ll be settled in at school.

Daisy’s energy levels are still very much on the up and apart from the odd lie-in she’s behaving like the average 7 year old. School is clearly much needed; vast amounts of discipline in particular! Weight is coming back along with hair. We’ve had lots of days out and spent the whole time outdoors as per Plan A. We’ve had a week of swimming lessons which she’s grinned throughout and wants to do nothing but be in a pool permanently.

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The caravan’s coming on and will be ready on Tuesday in time for Starlight’s Grand Opening. We’ve had a few weatherproofing issues but we’ve nearly achieved what she wished for.  Fidget helped with the painting yesterday and has painted herself in the process. After months away Alfie the Jack Russell is back from Hay House and Daisy is delighted.  He spends some of his time at Harry’s parents carrying out his role as Rat Manager and then comes back to his real home occasionally when he misses us. Sorry pics are all upside down; blog’s not brilliant!

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Back to hospital next Thursday for a check up then after a 2 year delay and an unbearably long countdown in sleeps, Daisy will finally get to visit London for the first time where she plans to blow all her Birthday money in Hamleys, get on the London Eye and go on the river. I then get left behind for a couple of sleeps to go to the Paralympics, get in the shops and do what I like when I like. Awful.

Happy 7th Birthday Daisy!

We’ve just come back from hospital and have amazing news; Daisy’s first MRI is clear! We’re all just so pleased and celebrating! The medics are seriously impressed with her and thought she looked incredibly well. Daisy said she’s missed the nurses (think it was the huge Birthday present that swung it).She told them all about recent weeks’ activities; holidays with pals, caravans, a cinema Birthday party on the hottest day of the year and a little get together with her classmates. We’ve been staying up late, having sleepovers, going on walks, playing with Fidget in the paddling pool, riding Sampson, swimming in Aunty Claire’s new pool – v luxurious; rather like a very short holiday. Plenty more to plan and do. Work starts on the caravan den this weekend which is perfectly timed and Daisy’s now really excited about it now she can see what it’s all about. Onwards and upwards at last!



Wednesday 18th July

Daisy’s still doing amazingly well with piles of energy and blonde hair that is now 1cm long!  She had her first post-treatment MRI yesterday so obviously we want the right result from that.

Our holiday seems forever ago but there’s still loads to do; last day of home tuition today, Birdland on Friday with Grumpy and Grandma and a cinema party next week to celebrate her 7th Birthday. It’s also to say a massive thank you and goodbye to her amazing friends in Class 2  who haven’t stopped thinking about Daisy and sending cards and best wishes throughout the year. Daisy starts at Moffats in Kinlet from September but will still invite her friends to the new den / caravan – when it’s finished! We hope to arrange other get togethers during the holidays for all her other friends who’ve been so supportive and helped us along the way.  

We had some brilliant news this morning from a little girl we met in hospital who is still receiving treatment. Coincidentally, she is from Heathfield where Daisy previously went to school – and she also came to a horse party at our house last summer. Small world.  A tumour in her leg is responding extremely well to chemo and things are now looking far more positive with the operation due over the next few weeks. Another little girl we met has had her operation and apparently is making an excellent recovery.  Still being in the loop is a massive relief, hearing the updates, knowing how they feel and hopefully being able to send useful texts and emails to get them through it.  I now know how carfeful you have to be in conversation with someone who’s going ‘through it’. The sensitivity you feel to every word that comes your way means supposedly harmless comments and irritating pleasantries can be misconstrued and never forgotten. Get it wrong and you’re a dead man.

Despite being plunged into such a diabolical situation with people you don’t know where you have the obvious in common, living in close proximity, wandering about with dirty hair, drinking vast amounts of coffee, trying to become a medic overnight to get ahead of the game, I really think does have a positive element attached to it somewhere. The phrase ‘what doesn’t kill you makes you stronger’ is true.  The whole thing has turned me into someone else. Harry must be so relieved. Will ask him. 

So, when you sneak to Macdonalds for the burger you pretend you didn’t have and definitely never admit to, remember to put your change in the tray underneath the window where you pay. That goes some way to paying for the accommodation we’ve all been in at BCH while our kids get the operations that have saved their lives. Bit of an emotional blog today, sorry.  Am just so pleased we’re all on the mend.

More Hols

We’ve had the best time with pals soaking up considerably more wine than sun. I’ve really never ever eaten and drunk so much. Daisy Emily and Adam had a great time on the beach despite the rain and we made full use of the spa. We’ve managed plenty of fish and chips plus daily ice cream. Daisy and I have moved onto holiday no.2 a bit further up the coast which is totally bizarre as we’re in the same place I holidayed as a child and not been here since i was 14. We’re feet from the beach again and Daisy loves it as much as me. Harry’s nerves brought on by spending a week in a static caravan has made him ill so he’s baled out by treating us to a hotel for a night and then sneaking off home to man the fort which is fair enough as we’ve had a wedding on. We’re watching the final and heading to the pub on foot if it goes to 4 sets.Everything in our caravan is amazing! I completely cooked us last night with the central heating. Haven’t experienced similar temperature since Kenya. Everything we need is within a few feet except Fidget and the others which we’re both missing terribly. Definitely bringing them here before the end of the summer! Just need a bit more sun, as ever.

Happy Days

The 120 sleep countdown’s over and here we are in sunny Wales – yes, sunny today. A year on since the last Mainwaring jolly and what an altered family we are. Daisy and the mini Mainwarings have been on the beach all afternoon in wetsuits digging vast holes in the sand, rock pooling, running through waves, playing rugby and having piles of fun. Brilliant pub round the corner, amazing views from the house; we’re all completely switched off already and none of us can quite believe its’ happening. Such a lot planned for the week; a Birthday for Harry on Wednesday which will no doubt be very dull and lacking in celebration, a full-on spa day for Clare and I tomorrow, cantering on the beach at some point hopefully, no cooking, planning, mithering or stress anywhere in sight. The men are golfing, the kids are happy and life is just brilliant. Noone would ever know!

Class Visit

Daisy’s class came to visit today as part of their topic on animals and they had an amazing time running about, being chased by Fidget in the long grass, meeting the other dogs, exploring the caravan, grooming ponies, chatting over home made cakes (thank you; very nice) and practising jumps in the riding school (without horses)! It was all over very quickly and Daisy was sad when they all left so she went for a ride on her favourite pony Lady Jane. We’re looking forward to Sports Day next Wednesday and will pop in and see how everyone is.

(Sorry there are no pics on blog of all the kids today but need school to clear them first)

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