18 June 2013

2 more to go..... (written on May 19th)

Finally a spare moment to update the blog.

We've been quite busy the last month having fun and being a 'normal' family again. It's been fabulous!

I managed a trip to Glasgow for Joanne's (Russell's sister) Hen party with included copious amounts of alcohol and other really fun things which I probably ought not to mention! The following weekend I went to the Colour Conference for Women, courtesy of Kathy (Paige's godmother) and now I feel like a regular person again, and my spirit is partially renewed so that I can cope with the next couple of months......

On the May bank holiday long weekend we all managed to have an uneventful, except for the terrible two tantrums that madame Paige has now mastered ! hospital free weekend. The Thomas Ball charity provided us with a 3 bedroom lodge at Holbourne Naish family park which is close to the sea. There was also a Leisure centre with a kiddie pool area. Paige I think had the best time of her life so far. She was in and out of the pool on her own and simply loved it. We just sat and watched her in awe, an hour later she was still running about and ecstatic. Needless to say that we visited the pool three times! We were also quite lucky that there was sun, so we even managed to go to the beach twice, the water was freezing cold and they had to wear cardigans but they loved it.

Paige is looking so well and her hair continues to grow, she even managed to put on a tiny bit of weight and was up to 12.6kgs. She has settled very well at Nursery and looks forward to her sessions and particularly her swimming days of course! She's so 'healthy' that when she spiked a temperature on Monday at 38.2C she was still running around happily, what's even more astounding is that she managed to bring her temperature back down on her own and did NOT require hospitalisation. Of course I was worried nonetheless and I took her in for a review on Tuesday. Dr Millard did a review and prescribed some oral anti-biotics because she agreed that Paige looked a bit out of sorts and had a red ear. When her blood results came back she had 0.9 neutrophils, another surprise. It's remarkable how different life is with a child that no longer has a Central Line, and as Paige goes from strength to strength she seems more able to cope with the temperatures and silly colds that she is bound to pick up now that she is at Nursery. My worries and fears now need to catch up cause she's leaving me behind.......

Next week is her penultimate chemo and steroid week. Chemo is very traumatic for her with the cannula, but the week of steroids have become much more bearable. Each chemo is now different as she experiences new side effects with each round, or maybe she's now better able to articulate it. She feels pretty rubbish after her chemo and also has jaw pains.