"Stop this train
I wanna get off and go home again
I can't take the speed it's movin in
I know I can't
But honestly won't someone stop this train"
John Mayer - Stop This Train
We are home. We came home yesterday afternoon for a night pass, so returned again today as an in-patient and received Oliver's next lot of chemo. We always knew that coming home would be tough, but we are really at a bit of a loss. I can't really think straight, everything is a bit overwhelming, and each moment is spent thinking of what the next thing to do for our little man is. When do we start his feed, which drugs do we need to give next, what does his cry mean, is he in pain, do we need to give him a laxative. From the outside it probably doesn't seem to be a terribly big chore. From where I stand, we bear a huge responsibility for the medical care and treatment of our son, ensuring he gets the necessary medications to fight his cancer and the side effects of the various drugs he is taking. In the hospital we knew when he was due something and had a pretty good idea of what was being brought into the room at what time. It's different when it's up to you.
Today has been a bit of a crazy day for us. We have each been a little bit loony, probably knowing full well that if we didn't laugh at each other we would break down in a tearful heap. It will come, just not yet. We are pretty much trying to busy ourselves so that we don't consider the reality of our situation. This is what the next 12 months is going to be like. In and out of the hospital for treatments, administering drugs at home, keeping track of Oliver's temperature and any other signs of sickness, being aware that at any time it could all go pear shaped and we could end up back in the hospital. It's a bit stressful.
On the positive side, Oliver has quickly fallen back in to his old behaviours. In hospital it was impossible to parent him as we normally would, because it would take less than 30 seconds before someone would come and see what was wrong and if Oliver needed some drug to settle him. Although last night was a bit unsettled (for me anyway, Karli and Oma seemed to sleep through it all) he has quickly started to settle himself and go to sleep without much fuss. Tonight should be a bit of a better performance I think.
Back to the lyric's at the top. Life is a bit crazy at the moment and still a little unreal. I feel like this just isn't happening and that I am going to wake up from a bad dream. Of course, it is real, this isn't a dream, and some day soon I will come to understand what it really means for my little boy to have cancer, and that there are negative and unwanted possibilities that are, quite frankly, frightening and not worthy of considering. I haven't quite come to terms with this train ride that we have become passengers on. There are plenty of others with us, and we will probably make some good friends, but none of us really knows our final destination, but we all want to get to the same place.
5 comments:
Dear Karli and Simon
Sorry havent written before or been in contact but have been on a bit of a train ride myself the last few months. My ride seems to have slowed for the moment so that gives me time to say.... your beautiful baby Oliver will be feeling all your glorious love and strength and that will help him get through the awful times. We hate the cancer word but it is what it is - you are giving Oliver the best chance possible by being the loving parents you are, he could ask for no more. You have a long train ride ahead, I know you will reach your destination. Love Jeanette and family xxxx
Kids the train ride will slow down and while it seems overwhelming at the moment it won't be long before you're in a routine and able to relax a little. Already you've shown that you can manage his medication and without the steroids and hopefully a reduction in his mouth care there will less for you to deal with. He'll have ups and downs but will grow stronger every day and closer to the bubbly Olly we all knew.
There are many of us on this ride with you,also wishing we could get off but so looking forward to reaching our destination as Jeanette said.
One thing for sure you certainly won't go hungry on your journey as friends and family are already cooking up a storm for you!!
Hugs and kisses
Mum-me
Dear Simon and Karli and Oliver
Miffy told me about Oliver and my heart skipped a beat. Sorry to hear about it all but you have made an excellent blog, very informative and I can feel the pain you are experiencing. Please know I will be praying for you all knowing God has you in the palm of his hands. I will regularly read your blog. God Bless you all. Love from Peter, Sharon, Amanda and Robert xoxox
Hey fathead!
Mate, we love you guys and our hearts cry with yours as we read your blogs. Thankyou both for posting your thoughtful and honest messages.
You have many friends who wish they could do more. We continue praying for each of you and the hospital staff. We thank God for the wonderful staff and people supporting you all through your journey.
With love
Trent, Shell, Jaime, Nathan and Hayden.
PS Go and have a Kilkenny on me! It must be my shout. Hoping to see you soon.
Like Noelene said, many are on this ride with you, even though you are at the front, as the world goes whizzing by... we are in the caboose... hopefully this ride will slow down just a little bit for you, so you can keep your heads up and occasionally look around, focus, and not have everything go by as a blur.
I am so glad for all the "physical" support of those friends and relatives that are manning the stoves, and helping with the more mundane functions of life.
We feel so helpless at times, when all we can do is read your thoughts and feelings and not be there to actually help.
We think of you constantly... wishing we could do more!
hugs and kisses
the 'Queensland' Roeys
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