Friday, 11 January 2013


Its late and I'm not sleeping. tonight I'm finding it hard to rejoice in our news of a clear scan when I read today that another child of ATRT died yesterday. A beautiful little girl. I can't stop thinking about her, her mother and her family. A beautiful lady that often writes comments of support on my blog. Her child is no longer with her and my heart is heavy thinking about her.
A part of me even feels guilty that my child is still here and hers is not. How is any of this fair? No child should be dying of cancer and the more I read about it the more frustrated I become. Because if more money went into research this wouldn't be happening.

We did an interview today and I'm suddenly wishing I hadn't. They focused on the good news and at the end of the day the focus should be on childhood cancer. Why doesn't that make the news every night? Why isn't that the focus of political campaigns?

I read in the paper the other day about the government spending 10 million dollars on renovating an old building? Truly, where are their priorities. I'm truly appalled by this type of what I think is senseless spending. I wish so much there was a major shift in all of this and that We could see a real change in childhood cancer research. But without serious funding it will remain the same and children will continue to die.

This all really saddens me as I now know many people like ourselves travelling similar shocking journeys and its just all so wrong. And thinking of this beautiful woman tonight breaks my heart. She can no longer hold her beautiful girl and I so wish I could make things different for her. I feel so damn helpless and so very frustrated by all this pain. Someone or some body of people truly should be accountable for it. Because her losing her child and many others is just truly so bloody wrong it's insane. I know there are great organisations like Eric Parishs Telethon adventurers but why does it have to take a parent to get things moving? And why can't he have that 10 million dollars instead of the building?

Honestly I get so frustrated thinking about it.

My heart aches for this woman and there's nothing I can do. I wish I could take her pain away but I know nothing in this world can do that. I know her journey has been and will continue to be the hardest she will ever travel in her life and one that has changed her as a person and a mother forever.

Today I was able to breathe but I know for many, this is not the case.


  1. Dear Leisl,
    I so understand your feelings of frustration and anger about the world wide lack of funding for pediatric cancer. Kids are our future and the most precious and vulnerable things on this earth. It should be absolute priority for the funding to go into keeping them safe and well. But it isn't! It's insane. It seems more important to fund politicians new offices (yes shame on you Barnett) and other pity projects. Wake up people. If the general public would actually know how many children and families have to travel this terrible road and how many kids die EVERY DAY something might be able to happen. Until then dear Leisl the awareness you and all the other mums create with Blogs, FB,and tv interviews is helping to create awareness and get the ball rolling. Its not enough to feel sorry for these families, its about getting of your backside and make even small changes that make a difference!I know we and the people of Perth and the world can achieve a lot if we work really hard at it. Thank you Leisl and Jayden for opening our eyes. Lots of love and Light xox

  2. Hi, been following ur story since my friend Cindy lost her son Ty from the same awful disease! Some kids do make it and will continue to pray for u and jayden! Awareness is slow but I see it is happening slow, too slow for me. Take care! Xoxo, love kristi from New York

  3. Dear Leisl,
    We could go on forever about what our governments do and have done, how they makes all of us live with disbelief. But one decision that stands out in my mind is the discredit of Dr Holt and his Radiowave therapy clinic here in Perth. His treatment should be the first in line not the last, as many people go there as their last resort and the success rate of his treatment is good considering these people have already walked the chemo trail. Our Oncologist don't even mention his treatment, just as they don't mention Proton therapy to you and many other treatments that can help people. The governments and pharmaceutical company have spent billions and billions over the last fifty years and a lot of the research go's towards making Chemo better. But after fifty years stage 3 and 4 cancers cure rates have change very little. Have they been barking up the wrong tree? I personally don't what to donate towards the Chemo theory. My husbands work friend lost his little boy to the same disease only three weeks ago. My thoughts, sorrow and sleepless night that I had over a little boy I'd never meet. The good news on Jayden's all clean is fantastic and may he live a long and healthy life.
    best wishes xxx

  4. Research Nut thanks, I ditto that if it weren't for Jayden's story in the paper I would not be aware of childhood cancer. Wish we could start the ball rolling toward change in that the government invests more time and money in research to curing childhood cancer. You say if we work hard
    at it, do you anything in mind when you say that? Thanks. Love and prayers to Jayden, so relieved to hear about his scan :).