The Journey

After a short ’no visual contact’ engagement, Billy and Bilbina got married on Sunday 15 May 2016. Backstory Bilbies became Violets’ favourite animal after an excursion last year to learn about their endangered status. Shortly after, one of Mum’s friends knit Violet a Bilby, it was named “Bilbina”. Bilbina is slept with most nights, has been with Violet on every hospital visit and is a much loved toy. Bilbina is regularly called a rat or a possum by doctors who can’t see the distinctive tail; on one occasion she was called a Siberian hamster (by a Fawlty Towers loving doctor). ...

Yesterday was tough, but a good slap across my face too. It was after my first night back at hospital after being sick for a few days and I was over it, wanting to get home ASAP. I told Colleen the same on the phone and Violet was listening. Violets’ attitude changed after that, she wanted to go home and was grumpy and over it! It was a massive reality hit, how must my daughter really feel? She has been in these 4 walls for 13 days and still has at least another week to go with her BMT. At least I get to go home every other day. This isn’t about me, I need to HTFU, step up and be there for my wife and family. I also need to watch what I say and do in front of my kids. It’s easier said than done and really hard when you’ve been sick and tired. ...

As we say goodbye to the induction phase we now have more clarity on what lies ahead for Violet in the consolidation and maintenance phases. This is a marathon, the finish line is not in sight yet, but we continue to run! Last week Violet went through re-staging to determine treatment effectiveness and any damage treatment may have caused. It’s only 10 tests over 4 days (GFR, MRI, MIBG, CT, Audiology, Catecholamine, Haematology, Bone Marrow Aspirate, Echo and ECG). ...

It’s hard to plan for something that has so many variables along the way, but I’ve tried to create my view of Violets Treatment in a short video, you can watch it on YouTube Part 1 and Part 2.

After a couple of months of “not being 100%” then 2 weeks of diagnosis at Lady Cilento (LCCH), on 12 November 2015, my youngest of three children, Violet(6) was diagnosed with stage 4 Neuroblastoma, a tumorous cancer slightly larger than a tennis ball (78 x 66 x 83mm) growing on Violet’s adrenal gland on her left kidney. Being stage 4 the cancer has metastasised and is in all her bones and marrow. Childhood cancer is rare, and neuroblastoma in kids older than 2 is rarer. ...

Re-posted from FB note from 28 Dec 2015. Depending on the day and where we are I’ve tried to capture our “new normal”, how our daily routine has changed and what it looks like as well as uploaded some photos. There is so much more that goes on and happens, but hopefully this gives you a little bit of an idea. At this stage a chemo cycle is 3 weeks long, 3-5 days of chemo as an inpatient hospital then 2ish weeks of “recovery” at home. Every week we have a day as an outpatient in clinic to have a check, get supplies/medications and replace dressings. Violets treatment will be 5 cycles like this, then surgery to remove the tumor then another chemo round before radiation and a few more chemo rounds. After that there is antibody therapy. ...