Come Rain or Shine

Come rain or shine, men can always find an excuse for a round of golf! Well 13 holes anyway, until the rain defeated them and the beer in the clubhouse became more alluring that the fairways, greens and 'friendly' competition. PJ played this afternoon and needed the respite after we had a tricky morning at the hospital with Leo.

Unfortunately Leo was not the most compliant he's ever been, and that was just walking through reception. I apologise to anyone who witnessed the WWF Wrestling performance Leo and I had in trying to coerce him into the lift at the Bristol Children's Hospital to head up to the Oncology Day Beds ward for a plaster and bung change plus to have bloods taken. All of which are nothing in comparison to other things the docs need to do but I think because the last time we were there, Leo ended up in hospital for 14 days. There's no doubt he must be anxious that he's going to end up there again for a long time, just as any of us would be. Except we can express these worries and concerns in ways that perhaps a three year old will find more difficult.

On the good news front, (apart from PJ's two at the 5th, par 4), Leo has eaten three sausages, two apples and drunk about 1 pint of milk this afternoon. Leo and I were pleased to be at Ainslie and Matilda's house in Bath whilst the boys played golf. And because it's a calming environment for Leo, where there's no other adults or older children vying for attention, Leo was chilled out and behaved well pretty much most of the time. We didn't experience too many of the massive explosions of anger and aggressive behaviour which has been prevalent this week. Maybe the increased food intake and the calm vibes sent out by Matilda and Ainslie helped to settle him down and feel comfortable and confident. Plus the fact that Ainslie is a born Nurse Nightingale and so amazing with children that he's always loved her company helps massively at this time.

It's so blindingly obvious that he is able to relax and let his worries dissipate when he's being left to play and use his imagination for himself, without too much adult interference and other children wanting his or my attention. Matilda, being nearly 7 months old, just smiled her most beautiful smile and made lovely baby noises when Leo waved the teddies at her and sang to her. Leo even went page by page through one of her books and read a story based on the pictures to her. Don't know who enjoyed it more; Leo, me or Matilda.

We are more determined than ever to try to sort out and finalise the whole benefits thing ASAP so as we can find a place of our own to live in an attempt to create a 'normal' home life for Leo. The difficulty is finding a landlord who will rent to us despite neither PJ nor I in full time permanent employment right now. If we can someone who will accept an increased deposit to counter any risk, then perhaps all the other anxieties may feel easier to handle. The oncology team includes child therapists also and we are meeting with them on Tuesday to see what tools they can give us to help Leo at this difficult time for him. So we do feel like we're tackling each issue in some way, shape or form.

Day 8 of cycle 3 tomorrow, so Leo's white cell count will / should be at its lowest and he's therefore more likely to become poorly. Quarantine it is then although at this point in previous cycles, we've ended up back at the hospital. Fingers and just about everything else crossed that this weekend has something different in store for Leo.