More pics

Thursday 6th March

We have been getting on very well at home. We have stopped William’s overnight milk (well non milk really but I digress) feed which at least means that I only have to get up when he hollers rather than setting the alarm for 3 or 4 am to change the bottles over. He is sleeping much better (touch wood because whenever I say that he has a bad night). We had a lovely family outing to the beach this weekend, no prizes for guessing which one! It was well worth the journey for a run around on the sand and chance to get water in our wellies. William’s Hickman line sprung a hole this week. So we traipsed over to Bristol via Bath (not sure why we bothered going to Bath first but at the time it seemed like the right thing to do) They cut off the faulty bit and glued a new bit back on so all ok now, we were anxious about an infection but seems that we have escaped this time. The location of this repair also means that the other repairs have been replaced, if that makes sense so fingers crossed we won’t have any more problems with it. It shouldn’t be too long now before he can have it removed.
We are obviously deeply saddened and touched by Lucy’s death and can hardly bear to imagine how Claire and Adrian must feel.

A Brave Little Girl

Lucy died on Monday our thoughts are with her family

News

With heavy hearts we write this entry. William continues to do well and Catherine will post his adventures later this week. Catherine has told you of the amazing family who had the room next to her and William on Fox when he first went in and how Claire kept Cath buoyant in those first weeks. On Saturday we had a sad email from Claire and Adrian. Lucy who is a couple of weeks older than William has reached the end of the road with her treatment and there is nothing left to try. They are going to a hospice this week for a few days to spend time together as a family. There is nothing else to say other than that our thoughts and prayers are with them every minute of the day.

Monday +137 – Thursday +147

It has been a while since the last entry, things have been so busy for me. Lots of William care and supervision and settling back into the ‘normal’. We went up to GOS last week and he had his Immunoglobulins and check up. He has now stopped his immune suppressant and is doing very well so far without it. It was another very long and tiring day but we don’t have to go back until mid March, phew! I am also another year older, and perhaps this time a little wiser. Mum started her chemo on Friday and is being very brave, I admire her courage. On Saturday Bryher came to stay which was lots of fun and David, Nicky and the adorable Otto joined us on Sunday for a lovely lunch (if I do say so myself! thanks in most part to Sir Jamie!). Rob started his ‘Just a walk’ training on Sunday morning and set off before dawn with Gillie in tow. A few hours later, after some complications we were able to successfully retrieve them (Rob has a new mantra, I must always charge my mobile phone and also learn my home phone number!) and they had travelled an impressive 20 miles or so. Auntie Nicky, Granma Ruth, Hannah and Ella came for tea on Monday and William played remarkably well considering his time away. It was lovely to see them playing together and William made me laugh when he tried to take Ella’s blood pressure by putting the toy cuff on her leg much to her bemusement. Grandma and Grandpa came for a visit on Wednesday and assisted whilst poor William had to have his NG tube changed and his Hickman Line dressing done. This morning Vikkie, Luke and Tamsin have been over for a cup of tea. It really was very nice to see them, William was pleased to find a fellow Jaffa cake lover although a bit perplexed that Tamsin didn’t want one (at 6 months old!).

Sunday +136

Another week has flown by with all the excitement that a second birthday brings! Things are jogging along quite well. We had to go to the RUH in Bath on Friday for a GFR test, which checks his kidney function by injecting some lovely radioactive stuff (only a bit!) and checking his bloods over several hours to see how quickly his kidneys pass it through. He ended up having a canula put in unnecessarily because the doctor didn’t listen to me which was rather distressing for William and myself but no long term damage done. It was quite nerve wracking though I was imagining superbugs all over the place and held tightly to my antibacterial wipes! William is getting fitter by the day and has done lots of walking this weekend. We went along the canal yesterday, holding him securely by the reigns to stop him chasing the ducks! Today we went along part of the East Mendip way which was beautiful it followed the banks of a river past ruined lime kilns through a deep narrow valley.

Just A Walk To The Beach Update

Cath is home and things are beginning to move. We are slowly filling a notebook with ideas. We hope you have seen the Website which Dave has started Cath is slowly putting pages together which I think she is going to run past Dave’s expert eye before they go live as he has done such a great job so far. We have sent out profile forms to go on the website to be filled in by the Long Distance Travellers and the Support Team. The first is back from B, for those worrying about the identity of her inflatable friend it turns out it is going to be a croc. She has found a website which does cheap OS maps http://www.dash4it.co.uk/ but before you all rush out to buy maps please talk to us about other LDTs who maybe travelling in a similar direction that you may be able to share resources with. We are going to set up a bank account soon and Doug has agreed to be Treasurer with Cath as co signature. We spent yesterday evening designing stickers to give away and there is much more in the pipeline. We have an email address now as well and it is info@justawalktothebeach.org Our congratulations to Tasha and Jim on the purchase of their TANDEM!!!!