Home from London

Tonight we returned from London, after an exhausting but interesting, and hopefully constructive (time will tell) 5 weeks in London. There was an exhausting list of things to do, theatres to visit and sights to see! We did the London Eye on New Year's Eve, the cable car from the Docks to Greenwich, the O2 to see Dancing on Ice, the Phoenix Theatre to see Dinosaur Zoo (a real hit), and the Rainforest Cafe to name but a few. All this around a twice daily visit to the hospital for treatment. Jesse has been confined to a pushchair for a great deal of the time, but this was of no concern to him as long as he received his daily dose of 'underground train'. When alighting from the train, we had to wait on the platform to wave goodbye for fear of uncontrollable screaming if we did not. As the train departed, the wave was slow and methodical, but in rhythm with the train, as it sped up, Jesse's hand would increase in speed until it was a simple blur. Highly entertaining for mum, dad, Skye and for the ever glum Londoners, who couldn't help but raise a smile. Skye has shown real fortitude throughout, at times he has had to take up to 22 syringes of medication during a waking day. He found this both annoying and tedious and has often told us, that he doesn't need them. On a related topic of medication, I found myself in an awkward situation at the pharmacy yesterday when trying to purchase a very ordinary bottle of Calpol. The pharmacist went through the routine of asking whether he was on any other medication. I hesitated, and then replied, "Umm... other than Ranitidine, Morphine, Metaclopramide, Ondansetron, Antepsin, Septrin, and Dexamethasone, umm.... no!" After an uncomfortable silence, where she was clearly mulling things over, she smiled sweetly and handed over the Calpol. I have learnt my lesson and in future, I think a lie is a much easier solution. We have to see the funny side of things, and Skye has been an absolute gem, coming out with some great lines and we have had each other giggling away about some of the most inane things. Most recently his ongoing desire to eat noddles, no niddles, or is it noodles, has caused us hilarity. For the most part he has been on good form (relative to what he is going through), and when this horrible reality seems like normality, it seems just that, horribly normal. He continues to smile, but underneath it all, I often wonder what is really going through his mind, when he sits and watches Jesse dashing about or other children running around and leading normal lives. It is curious that he wants to re-live things he has done in the past, when he was able bodied. We cannot believe that 4 months have flown by since his diagnosis. We now have a month off treatment, but with the 'normal' monitoring of bloods, preparation for the next phase, and of course the ongoing short term side effects of his Radiotherapy. His mouth is currently littered with ulcers, he has mucositis of the throat, the dex continues to cause swelling and temperament issues, and he continues to survive on a diet of jelly and noodles (chicken super noodles ONLY)! We will be back down in London on the 15th January for a follow up appointment, and thereafter we will be back in the hands of the Oxford team. Sally continues to be her brilliant self, attending to Skye's every need, but also to those of the family. May we wish everyone, everything of the best for 2014. We hope that is a happy and fulfilling one for all of you.