But, Dexter has made us stronger. After two years of almost constant bad news and hearts so broken they could barely mend, we are coming back to a good place.
Our every day life is difficult, far more so than anyone could ever really comprehend.
We speak for Dexter, a two and a half year old, and we try to maintain an up-beat and cheeky attitude to everything.
Behind Dexter, there are people who's courage and strength, dedication and love are simply overwhelming.
When we first heard of Dexter's cancer diagnosis (after his brain damage at 30 days, his cerebral palsy, his vision impairment and his 4 months of life in the NICU), he was 13 months old. We were approached and asked whether we would like to publicly speak about Dexter.
Not without bawling at the very first words... not without streams of tears and disgusting snot. Not without sobbing our way through the story.
That wouldn't make for very good viewing!
Now, we're stronger. We're sharing Dexter's story.
We never intended for it to be this big. It all started with a few jokes, thrown on Lenice's facebook page when he was first diagnosed with hepatoblastoma. No one even knew about the cancer then, but already, people joined us in the joke sharing.
Soon enough, it was obvious... Dexter needed his own facebook page.
So, we set one up.
Then, there are so many family and friends, who are not on facebook. So, the Love Dexter website was created... and then came the blog.
Now, he has a twitter account and two email address.
This little boy is no longer just ours. He has been embraced and supported from people all over Australia and the World! He is loved by a beautiful community of people. He has been 'adopted' by people who have fallen in love with him, and his eyelashes, as they have learned a little about his story.
And, what a story! We tell people and it feels as though we are making it up as we go. How can one little boy be made to suffer through all he has endured?
Our goal now, is to raise awareness of the issues children like Dexter deal with everyday.
We want people to know more about childhood cancer - and not simply be afraid. No pity... just love. And, cancer is more than a bald head. It lasts much longer than when that last bag of chemotherapy is taken down. Childhood cancer is nasty, and it is still a big dark cloud over us.
Cerebral palsy is also nasty. The way Dexter fights every day makes us want to be better, stronger people. It's taught us what really is important. Daily therapies have definitely helped and every little step in his development makes our hearts sing. (And every setback is another kick in the guts.) When people celebrate Dexter's achievements, we feel so proud.
His vision impairment doesn't seem fair, but we are doing everything we can to help him improve his vision. And, those moments when we are sure he can see us... we grab on to those moments! We get in his face and we smile and smile.
Dexter is a beautiful old soul. We have always known it.
It still surprises us how loved and adored Dexter is, sometimes from people we have never met.
You will never really understand just how much we value the love and support you shower on Dexter. You will never realise how much that supports us, and helps us through the worst days. Your facebook comments and likes, the twitter comments, blog comments, emails and personal contact mean so much to us, Dexter's family.
The postcards and gifts he receives make us smile.
For loving Dexter.