Wednesday, 5 September 2012

One more day at home :(

Not feeling well these last couple of days. Not sure whether it's legitimate sickness or just sheer worry about whats to come.
Luke has been Sick with a cold and conjunctivitis so we have had to keep him home from school but would have anyway as his teacher rang us Monday morning to let us know there is a lot of illness in his class at the moment. Tossing up whether to send him back at all this month while Jayden is doing this round of chemo.

Seriously do not want to put Jayden through this again. We so want to stop now. Every inch of me wants to not do this to him and it's killing me the very thought of it. I keep wishing there was another way. We are seriously thinking about not doing the third round but I don't think we can make that decision yet until we have done this one.

All day I spent yesterday on the brink of tears and today is no different. Have been trying to keep myself busy but nothing stops me from thinking. It doesn't matter what I do today I am still in a constant state of anxiety. I'm so frightened about how Jayden will go with this round. I read on the Internet and know mothers with children in similar conditions how things can so easily take a turn for the worse. We know every time we subject him to this stuff we are essentially risking his life. But what choice do we have?

This never gets easier in fact as Danny said today to me, 'it gets harder'.
We are especially worried because Luke has been ill and Jayden could potentially be carrying the same virus but it just hasn't shown itself yet and will or could when he has chemo. Which is really not good at all.

I'm sitting at the kitchen table at the moment and Layla's about to finish school. Jayden is asleep in the car out the front with Danny. My dad is working in the office and Luke is helping him, well as helpful as a six year old can be with banking and office stuff. entertaining more like.

I'm very lost today, just like yesterday. I really don't know what to do or think anymore. It's just driving me crazy. Not being able to think and breath like I use to be able to is truly exhausting and really damn sad. I just want to cry and cry and cry until there are no more tears. But I know that the tears will never stop, never. Our life has changed forever and I'm not sure if there will ever come a time that I will be "use" to this new life.

I went to the doctors yesterday with Luke to see if we could knock his conjunctivitis on the head. He inevitably asked me about Jayden and I wanted to cry. I didn't. Luke being there made me suck it up and inform him of Jaydens progress. His comment was " it must be hard".
There's no doubt about that. It's hard, very hard. And it's always really really hard leading up to the next round of chemo.

We have been so fortunate to have him home so often with this round and I just don't want to let him go again. I don't want him out of this house and in the hospital and I don't want him away from the family. I hate us being separated its truly crushing.

Luke being home these last couple of days has been so nice for them both. Jayden and him have been spending heaps of time playing even though Luke has to wash his hands so often it's driving him nuts. They chat together, laugh together and Luke its constantly looking out for him and helping out where he can.

I love that my kids are so kind to each other. I love that they know enough to know that their time together is special. There's something vey unique and can't be explained with words their connections with each other. I'm so worried about their pain in the future.

I really miss that freedom of not worrying about tomorrow. I miss enjoying a cold breeze on my face and not having to think about anything else but that feeling of coolness. I miss being able to look at my children and wonder what they will be like when their adults instead of worrying if they will ever get to be adults.

I'm dreading tomorrow. I don't want this to be happening to my child or my family and I hate with a passion that I can't stop it.


  1. Hi Leisl
    I really hope you can watch this true story.

  2. Leisl,

    Just saw on FB that you have a reprieve from the hospital, that's great! Hoping the extra time at home can be restorative to both Jayden and you.
    I know just how you feel - it is a terrible choice we are given as parents as we put our kids through treatment and see them suffer the side-effects. Those tears that are just beneath the surface for you will be with you for awhile - some days are just better than others.
    You are doing an amazing job, mama! You didn't ask for this but all you can do is try to weather the storm as best you can and keep as positive as you can. During Gavin's treatment I was advised to focus on a day in the future that I could look forward to, like his first day of school. Some days that was hard to do, but yesterday I waved goodbye as he went into junior kindergarten, a happy and smiling four-year-old!
    Jayden can get through this - I believe in him, absolutely!
    Big hugs from Toronto,
    Erica, Gavin's Mum