As I write this I am sitting on a park bench in a quiet shady spot at the hospital with Luke asleep in his pram next to me. I've taken him out for an hour to give Letitia a break. For the second day running we've had a trip to the local park as well. Apart from having to go home to an empty house, this weekend has been brilliant.
The plan is for Luke to come home on Tuesday. He'll then be back in hospital in a little under two weeks to have his hickman line replaced, and then start chemo round two. So all being well, we get 'normality' back for a fortnight. That is normality with regular morphine, occasionally topped up with paracetemol (as Luke has needed today) plus extra feeding down the NG tube. And having to be hyper careful about germs and bugs and things. We can't afford further delays with the treatment from another infection, so while he won't quite be 'Bubble Boy' he will have several extra thick layers of cotton wool figuratively wrapped around him.
It's a bit of a cross between Challenge Anneka and Changing Rooms at home right now. In preparation for Luke coming hone my in-laws have been bravely cracking on with decorating our breakfast room, which is really the room Luke spends all his waking time in. With Tuesday's deadline rapidly approaching troops are being drawn in, but it looks under control. Our house is an old one, which usually means any job ends up far more complicated and time consuming than planned - but luckily this seems to have gone well. We just want everything to be just right for Luke when he gets home (and easy to keep clean, which this will be).
I am still laying awake at night worrying about the future and what Luke will gave to go through this year, but we have had a few really good days where his pain has been controlled, he has been happy, the sun has been shining and at that point in time everything has been perfect. Six weeks ago I didn't think we'd see many days like this, and even a week ago things were completely different. I cannot over estimate how much I under estimated Luke's resiliance.
Here through a retweet from @rubarrichello - just wanted you to know that in the US, someone is wishing you and your family many more days like this (and better) to come. All the best to you, Luke!
ReplyDeleteWith you in this battle. My 10 year old was diagnosed with cancer in January last year. There are days when you wonder whether things will ever improve, there are days when you think "could I do/have done something different", there are days when you wonder what possible future there is other than the next round of treatment. And yes, there ate days when things go horribly wrong. But there are also wonderful days when things go well, when your child will do something that just makes you cry with joy and pride, when someone will say that something you needed to hear. You are not alone. Remember that support is out there, and don't be too proud to accept it. With love and prayers.
ReplyDeleteHi Paul, wishing you and your family more happy days like this. Baby Luke, stay strong!
ReplyDelete