'The Journey' started a while back... (Day 45)

Can I just say from the outset? I really dislike the term journey. It's just so overused! Master chef: "My cooking journey", Idol or The Voice: My singing / performing journey" - please, give me a break. But it seems apt in our situation and there are few words that encapsulate the path we have ahead of us. Journey, besides being a power ballad band from the 80's, gives an indication of adversity or length of time to be encountered to reach a goal. This is my blog that hopefully in time we allow me to make sense of what has happened and how we will get to our goal.

Like all good movies (well to be honest, mostly just Quentin Tarantino movies) this first post is not at the beginning of the story.

If this was a movie, the story could be traced back to December 2003, when my gorgeous wife, Jane, and I were married. However, the 3rd of March 2016 was the day my family's life changed forever. Our 10 week old son, Luke was admitted to Westmead Children's Hospital with symptoms of flaccid lower limbs and general unsettled behaviour. That night, he had emergency surgery (laminectomy and partial tumour removal) on his spine and they kept him under anaesthetic for 24 hours afterwards. A week later, Luke was diagnosed as having an extra renal Rhabdoid tumour. In our limited research (under our good doctor's advice) on the condition, it seems that Luke is quite unfortunate. This tumour is malignant, aggressive, and incredibly rare. Statistics in Australia are limited, but in the USA, with a population of over 320 000 000, just 15 cases such as this are recorded each year. Incredibly rare, but not for our family. More details about the condition to come.

Today was Day 45 and it was a good day. Some sleep was had by Jane - always good. Luke is being fed on demand. While we're big believers in routine, it's hard to justify that to and for a 16 week old that is currently in the midst of his second chemotherapy cycle. Our eldest son, Charlie, recently turned 3 and is still in that egocentric phase. A lot of our mental energy is dedicated on how to keep him occupied. Today's activities consisted of moving a cubby house from a nearby house's council clean up to our yard (while only yesterday I cleared some of our rubbish to our street curb), riding to the park on our bikes and playing with his mates (by mates I mean Jane's mother's group children - who have been amazingly supportive), and to top it off, his grandparents took him to West Ryde to ride on model trains. It did mean he was tuckered out and asleep at a reasonable hour.

A nice dinner courtesy of the plethora or friends and colleagues who have been making special or extra meals over the past few weeks meant that cooking and cleaning was minimal. Tonight was BBQ marinated chicken on brown rice with beans and carrots - thank you. A bit of taped TV, the second half of the Swans' game and even 20 min of the new Star Wars movie on Blu Ray. Like I intimated, a nice normal night.

Credit to this blog starting must be given to a special person who wrote a blog I read today. Elliott Millers Blog is a special read and brought me to tears - possibly my first since Day 4 of our own journey. On the drives to and from Westmead, I had thought about writing a book about this, but then I thought, my grammar is awful. Stick to what you know. If I can write a blog about the Ashes, this should be easy...just less humourous.

Signing off for today - Josh.