Tuesday, 28 July 2015

Jayden and the kids have settled in so well at where we have moved to. They've befriended the neighbours children and Jayden is now truly in his element. An amazing bunch of awesome kids that Jayden and his siblings now call friends, its so awesome to see. I am so very happy to see them all so happy.
Jayden is particularly fond of the girls and is in his element in their company. They are all older than him but they are all so beautiful and kind to him. I'm so happy we have moved into such an awesome street with wonderful neighbours. We do miss our old neighbours but it's so nice that we have also gained new ones.

Homeschooling is going ok as we begin our second term. The moderator from the education department visits tomorrow and I'm not exactly prepared but I'm confident we are doing ok given the moving of house and being complete novices.

We moved into a house almost half the size of my dads and half the block size but I really love that it's small. No matter where I am in it I know where the kids are and they know where I am. Jayden can play anywhere in the house and I'm still close to him and that's awesome. He seems so much more content and happy as well and I think it's for the same reason as me, We are close all the time. It's also a lot easier to clean, yah for small homes.

Our animals have all settled in ok too. The dogs were a little stressed at first, especially our old blind dog Larry but now he is settled and much happier. Chickens, rabbits and guinea pigs are coping well too and getting use to having the dogs much closer to them now as before they were separated. And they now have plenty of kids giving them lots of attention.

So all in all the move has been good. As stressful as it became at times we always knew it was going to be ok as long as we are all together. And it has been.

There is a very sad part to it all and that is, the prospect of losing our beautiful neighbours. Their homes may be taken from them for the proposed freight link. We are all devastated by this. Firstly I truly can't believe that the government can do that and secondly it will split in two a truly beautiful little community we have all established. Most of these children have grown up together and now that we are a part of it too I really want my children growing up with these beautiful kids too.
The frustrating bit is the feeling of helplessness to do anything. I wish I could stop it but I get the sense that the government has already made a decision on this and it's not going to back down.

the bit that annoys me the most is the politicians whom are making these decisions inability to put themselves in the families shoes that will lose their home. Yes they will be compensated but they lose their beautiful community, and the kids friendships, all of which they have worked hard to establish. You can't compensate for that. If it were one of the politicians homes that were there we all know that this wouldn't be happening. Like everything, if they aren't affected by it directly, it seems they don't really care. Because if they were, things would be very different.

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Friday, 17 July 2015

The last few post I've written were about my restlessness from sharing Jaydens story with the media on behalf of The Children's Cancer Institute. I worried it wasn't portrayed the way I had hoped and figures were incorrectly stated. I stressed about the headlines, the angle of the story and worried it wasn't giving the children's cancer institute the exposure it deserved. And most of all I worried about jayden.

I got an email today from the children's Cancer Institute that read "by sharing your story so selflessly, you helped us generate $52,827 worth of media coverage (traditional and social) that has reached an audience of 355,108 people!!
This is of course is in addition to the funds raised through the tax appeal, which has raised up to $353,610. "

The tax appeal is on the following link

When I read this i was so pleased. It made me feel like it was all worth it. No matter how difficult it felt at times and the vulnerability we felt afterwards after opening ourselves up, I now know it was worth it. This money and awareness will mean a lot to other families who enter this world of childhood cancer and that feels good to have helped that happen. I'm so proud of my little man and my family. They are truly my rock. Love them all so very much.

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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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Wednesday, 8 July 2015

"When I get big like you mum I'm going to buy a house and I'm going to find the warmest room in there and you can sleep there with me." That was what jayden said to me this morning when we were up. It was so cold this morning in our house and we were all trying to keep warm. But we later sorted that out as we all went out to the shops today and bought a little heater for the sitting room. Now it's the most popular spot in the house....in front of the heater.

We have finally moved with just a few things left that we are going back and forth to get. It's been huge. Didn't expect it to be so huge nor as stressful as it was. It took a toll emotionally as well which also took me by surprise. But looking back now it all makes sense and I was a bit naive to thinking everything would or should run smoothly.

I was definitely saddened by closing a huge chapter in my life and felt very teary about saying goodby to our family home. However like a beautiful friend of mine said "a new family will live there and make new memories and thats a good thing". She's right and we are aware that it is a family with four children under eight and that made me feel much better. The comfort of knowing our family home will now become someone else's family home. It will be loved and that's the most important thing I think.

I also got comfort in the thought that I believe this is what my mum would have wanted and that where ever we go she will be with us not there in the house.

Feeling a little flat tonight as I did an interview with a television show to help raise awareness for childhood cancer, in particular the children's cancer institute that is currently raising funds for personalised medicine in Australia for children diagnosed with cancer.

I'm very much an advocate for research and had hoped the exposure would help to get them the much needed funds they require. However the interview was not easy and definitely has taken its toll on me emotionally. It's very difficult to revisit a time that you spend most of your waking hours shutting out. It's difficult to be reminded and asked about your fears. And it's just hard to allow all those wounds to reopen.

The kids were great through it all and truly are my world. They are my beautiful little rascals and I love each and everyone of them so dearly.
I never watched the footage on TV. I couldn't, but danny did and said it was fine. I just hope it raised the awareness and funds needed.

I also felt uncomfortable about the newspaper heading in the paper this morning. They referred to jayden as a "miracle boy". It might sound weird to anyone else but when I saw the heading it made me incredibly nervous and feel extremely vulnerable. I can't explain it but I feel like if I let myself feel at all comfortable or relaxed about jaydens condition then it could all go very pear shaped. Like I need to be vigilant all the time and not feel "ok" about anything. So when I read this, i was like "no! Don't say things like that! It might all go to shit now that you've printed that!"
That probably sounds crazy and completely out there but that's how I felt.
Yes I'm so grateful he is with us, oh my goodness am I so happy about that. And yes I acknowledge that it is incredible that he is with us given his odds but I'm very aware that this could change in an instant and I don't want to be thinking everything is "ok". When in fact, the reality of childhood cancer is, its "not ok", not ever.

When jaydens an old man and he's visiting me in an old peoples home or as he says "will let me sleep in his warmest room of his home" then I will be saying "miracle boy" then I will relax and stop worrying about anything other than old age stuff. I so hope and pray I see that. More than anything in the world I hope for that.

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