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!!!!

William's 2nd Birthday

We are so lucky to be celebrating William’s second birthday at home. We sat in a meeting with William’s care team in GOSH at the start of the year and said that we would like to be home for his birthday, they said that would not be possible. The good thing was that no one told William and he improved so much that we made it with weeks to spare! On such a special happy day you can’t help think of those you have left behind and what they have to carry on going through.
After an early start, more to do with mummy wanting to open presents than William, we brought William down stairs to a heavily decorated living room. Not quite sure how Cath found the time after making cakes yesterday she had managed to make paper chains out of wrapping paper and a banner as well, not to mention the balloons and fairy lights.
It was not all presents and cake, Alex came to take bloods and change William’s central line dressing. After a pit stop at the chemist for Granma Sue and Grandpa Doug to pick up some strips that didn’t come in the dressings box the change was completed and Alex rushed off to teach some nurses in Trowbridge.After William had recharged his battery and we had eaten a lovely lunch, Pappa and Granma Ruth came bearing many gifts and after a fog of flying wrapping paper he emerged with what can best be described as a misshapen washing up bowl which he sits in and we spin him around the floor. Great fun! It has been a lovely day, thank you everyone for thinking of us.

Monday +123 – Friday +127

We have made it through a whole week at home! (touch wood quickly, William has a teeny bit of a temperature!) It has been very tiring and I am still adjusting. William has still been unsettled at night although we have reduced the milk further. He has been in good spirits all week and lots of fun. Grandma and Grandpa came up on Tuesday and the day flew by. We went up to GOS on Wednesday. The journey went as well as could be expected although we arrived a little later than we had planned. Clinic was rather stressful. On arrival William spied a big ride on racing car and made a bee line for it, unfortunately we had to hold him back (physically) with his very noisy protests until we found out if he was noro virus negative and ok to mix with the other children. Fortunately he is, so we were able to let him play with everyone and all the toys and he was able to get on the car, much to everyone’s relief. We saw an immunology doctor who we had never met before, which is always useful!!! However, William is doing very well and they have reduced his immunosuppressive drugs further and we are in the process of reducing and removing his diuretics and anti sickness meds, so all good. We caught up with a few families who we know and some are doing well, others not so well. I went to see Claire, Adrian and Lucy who had just been admitted to Lion ward for the next stage of their fight to get Lucy well. I was SO impressed with Lucy who can not only correctly identify and say diamond but can also pick out colours in both English and French (I am sure it is just the age difference, she is almost 2 weeks older than William!! No pressure William but I am expecting great things from you in the next few days!!!) After about 3 hours in London we headed happily west again. Thursday and today have passed relatively uneventfully (which is the way we like it).