Normal for now

First of all, for those who don't already know, today is a very said day for the Marshall family.  @Jack_Marshall_ passed away today - a brave 6 year old boy who succumbed to a brain tumour.  This in the same week that @harry_moseley, a brave 11 year old boy also died of a similar illness.  Both of these boys faced their illnesses head on, and did everything they could in the time they had left to make things just a little bit better and make every day count.  I wonder how many of us can genuinely say that?

It puts our problems into a bit of perspective - at least our consultants are broadly confident at the moment that they can cure Luke - it's just going to be a long and hard road to get there.  It will all be worth it to hear one day that he is clear of cancer though.  At least we have that hope and dream to hold on to.

Until then, we have to try and carry on as normally as possible.  That now occasionally includes a wrestling match with Luke in the morning to re-tape his feeding tube more securely to his face, just to try to stop him pulling it out altogether.  I think he has had so much done to him, that as soon as someone tries to hold him still, he panics, and a relatively simple job turns into quite a drama!  Still, got it done and was only a bit late for work!

Luke has to have another blood test tomorrow.  We are fast realising that with all of the health care he is receiving, some at Addenbrooke's, some at at local hospital, so at home from the community team, it can get quite confusing over where we are supposed to be with him and when.  On Tuesday we were told he would need another blood test on Friday to make sure his blood counts are heading in the right direction, prior to surgery to insert a new Hickman Line of Monday.  We were told it could be done at our local hospital.  We weren't told that actually, a community nurse would be out to our home to take the blood and get it tested at the local hospital.  Never mind - a couple of phone calls today and it's all arranged.  I can't believe it's Friday tomorrow, and we have the weekend and that's it before the next hospital stay.  Trying not to let it worry me too much, but it's not easy.

I have mentioned several times about clicking on the adverts on my blog site.  I then accrue a small amount of money each time which will be paid to us, and we will use it to donate to child cancer related charities.  People reading this are doing really well, and hopefully in a few weeks we will have enough to be paid and make the first donation.  In the mean time, keep clicking - preferably on an ad that actually interests you in some way though!