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.