Wednesday, 15 July 2015

I can't sleep. Thinking about everything. Jayden.
Another newspaper printed a story about him and yet again it did not go as I hoped. They quoted figures in the article of a survival rate of ATRT now being 70%. I was furious as I know that not to be true and it down plays the seriousness of Jaydens condition and every other child that is diagnosed with this disease.
And why give figures! It's shit that's all that needs to be said. Childhood Cancer is shit and we need to desperately do something about it. Stop building stupid foot bridges or freight links that will also be our front yard and Stop wasting money on crap. Instead, put it into the research of childhood cancer for goodness sake.

OMG I feel so cross that I put myself and my family out there because I want people to get how crap this is and hope that the damn government would help a whole lot more but the media have to put their own spin on it to sell the news and it's just not right.

I wish I could right the story myself and put it on the front page in big print with the heading "childhood cancer is shit and we need to do something about it" full stop.

I know I'm probably ranting now and I'm certainly feeling a little crazy upset in the head. And I'm really wishing I never put myself out there. I have this awful feeling in my gut now that people will read it all the wrong way, judge my family and I, or have feelings about it all that aren't want I wanted. I don't know. I just feel incredibly vulnerable and exposed now. It was different when jayden was in treatment as we had one focus and one focus only and nothing around us mattered, certainly not what people thought. But now, I spend my days so full of anxiety and fear that this sort of stuff just adds to it. And I so want people to see the truth. To Read the truth and be told the truth.

I really do think I'm rambling now. I'm so overtired and I just need to sleep. Moving house, this, I think I just took on too much.

The whole experience with the media has taken me back to a place I've worked so hard to keep inside. I really feel like I'm struggling to keep it together. Like a balloon ready to burst into a billion little pieces. I keep trying to get on with everything but inside I don't feel like I'm keeping it together at all. I'm finding myself tossing and turning reliving procedures, the whole nightmare.
It just never ends. It really doesn't. No matter how far you travel in this journey it doesn't end. And I'm so damn scared. I'm so worried that all this "miracle talk", I can't explain it..... I'm just really worried. Always am.

I so wish they could discover a miracle drug that could guarantee the cure of Jaydens cancer and every other childhood cancer out there. I so wish That everyone I know who's child is fighting this disease get to feel the breath they would exhale which would be full of sheer relief and the breath they inhale from then on, be finally one of peace if someone discovered that miracle drug.
That's what I wanted the media to help with, that's what I want people to know and help us to achieve. To be able to exhale that breath of sheer relief and inhale the breath of peace. To see our kids grow old. That's all I want. That's all any parent wants. Their kids to grow old, be happy and have a full life. I so hope and pray for that.

Jayden with his dog at the park.

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