Monday, February 16, 2009

Mixed Bag

What a week. The news of the passing of James our special friend and beautiful soul hit me hard this week. I will never forget his compassion for the other kids on the ward or him making a special gingerbread man for Joshy to make him smile. He was, and will live on in our hearts, as a gentle and sweet boy who will be greatly missed.
James's death has really given me a jolt though and I am feeling so guilty for my whinging about being tired and feeling lonely. I would never sleep again if it would mean Vanya, Shane and Liam could have James back. How selfish of me for thinking about how I am feeling when someone else, another precious family has to endure the ultimate loss.
I have also been getting quite angry of late too at the lack of funding, the lack of publicity and the lack of attention paid to childrens cancer. Childrnes cancer kills more kids than AIDS, asthma, Cystic Fibrosis and Muscular Dystrophy COMBINED...think about that for a minute. That is just unbelieveable and so wrong. I need to do something so badly but I am not sure how to go about it...yet. But I will figure it out and make sure people are aware, caring and giving their time and money to find the silver bullet we are so desperate for.
Josh is well and beautiful and as healthy as we can hope for at this point, we are not at the end of this battle and where there is life there is hope. Josh has had his week of chemo and it has all run smoothly excepting an off day on Friday and the odd outburst of wanting to go home (of course). Thanks must go to everyone who ensured Josh's chemo happened here and ran smoothly, it really went perfectly to plan.
All my love

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