Cant sleep

Luke had a reasonable day today.  I got to see a bit of him this morning before going to work, which was nice.  He was in bed by the time I got home, and although he woke a bit tonight when we did his drugs and top-up feed through his NG tube, he settled to sleep again fairly quickly.  Letitia told me he managed to pull his NG tube out (again!) this morning so she had a trip to our local hospital to have a new one put in.  It's not something that Luke enjoys, but he has had a few now and generally calms down fairly quickly afterwards.

I cant sleep at the moment, hence the late night blogging!  It's a combination of worrying about Luke and what is happening inside his little body; worrying about Letitia and how she is coping with everything; thinking about some of the stories I have come across while researching childhood cancer etc.  It seems strange to me, as we struggle through this experience with Luke (and we are only just at the beginning) that others have completed their journey with an outcome that we can't bear to think about, and have such strength and dignity.  There are some very inspirational people out there, and it is quite humbling to read about their experiences.

BUT - we aren't thinking negatively (or are trying not to, anyway).  It's the weekend, and I am going to enjoy some quality time with my family.  We probably wont go anywhere, or do anything extraordinary, but just spend time at home together.  It's the Japanese grand prix, and while Luke obviously doesnt know what's going on, he has always seemed to be captivated watching the racing with me when we have done it occasionally in the past.  I can't wait until Luke is old enough to go to a race - a weekend away with me and his Grandad camping at a race track and watching a grand prix is something he wont have a choice about doing!

There are various charities and appeals in aid of childhood cancer - you dont have to look too far to find them.  I have made small donations to a few that have moved me recently, but want to do more.  Once we have got to a better place than we are in right now, and I have some physical and emotional energy, I will look at the best way to do some proper fund raising.  In the mean time, you will have noticed a couple of adverts on this blog page.  When you visit and have a moment or two to spare, perhaps click through one of them.  That racks up a small amount that Google attribute to my account, and we will donate to charity.  If you don't have time or don't want to, then that's absolutely fine.