The Journey

On 18 June 2023 Lighthouse Church Bridge dedicated their new playspace in Violets honor. We had the privilege to share a little about Violet at church, below is what we said. Shortly after her 6th Birthday, our youngest daughter Violet, was diagnosed with stage 4 neuroblastoma - cancer. The next 6 years Violet fought through 5 relapses, countless treatments and medical procedures. Despite the often traumatic nature of what Violet had to go through, she was the epitome of child-like faith. Even at a very young age, she would both surprise and challenge us with her perceptiveness and ask questions that we’d never even pondered. ...

How do you tell your child they are dying? Six months prior to Violet’s death we were told there were no more options to treat her cancer, she was palliative and had days to weeks to live. It wasn’t as simple as that, there were options, but none were great, all ended with death. There were two key reasons for this; firstly the neuroblastoma had spread to the meninges of her spine and brain, which there is limited treatment options for (in initial or early relapses) in the US, secondly her marrow was so fatigued it would not recover from heavy treatment. ...

We sold our renovators delight and were looking for a sanctuary, somewhere quiet and space to refresh from hustle and bustle of the world. We bought land in the hope to build but faced a lot of challenges with bushfire and landslip overlays. The final straw was Violet relapsed for the first time. We gave up on the dream to build and sold our land for a loss. It was a tough time, but we still believed in faith, prayed for a home, and planted more seed in the church building fund. ...

As the months pass since Violet died and we create a new normal I’ve reflected on a few things that are different without her here. One of those is our bedtime routine, to help me to continue to remember (and not forget), I’ve documented it here… A few years into Violets treatment bedtime became a massive challenge. After many late nights, discussions with doctors and a horrific experience with a psychiatrist, Violet was prescribed medication to help her wind down and get to sleep. ...

After fighting cancer for 6 years, last October my youngest child Violet died. Several years ago, after almost burning out I realised not to ’live for work’ but to ‘work to live’, the last 6 years have been closer to ‘work to get by’. As such, work has taken the very back seat, I’ve taken whatever leave I can and done what’s been needed to get paid. I’ve been very tactical in my approach; I’ve been brutal at prioritising and leveraging others. Unfortunately, this has left some of you in tough circumstances. ...

Some quotes that I’ve found comfort in. Attribution of quotes still to be added We should feel sorrow, but not sink under it’s oppression. Don’t let sadness steal the beauty of your memories, remember love never dies. May you find a little peace every day to remind you of the eternal peace your loved one now has. / While you grieve, may you have a quiet moment every day and liken it to a peace Violet now experiences. ...

On Thursday 21st October 2021 at 10.30am at C3 Church Bridgeman Downs we celebrated Violet’s life. Although the links below will never be like it was on that day, they give an indication of what the day was like. Celebration Service Recording Order of Service Memorial / Condolences book Eulogy Life in Pictures Paylist used at church and wake (ie. songs Violet enjoyed) Songs used in the church service Grave - Portion 19A, Allotment 76C at Pinnaroo Lawn Cemetery, 285 Graham Road, Bridgeman Downs, QLD, 4035 Facebook page (Violets of Tomorrow) for random updates Violet Ruth Box5 October 2009 - 11 October 2021 ...

I don’t think Dulux were aiming for deeper thought when they created this colour. But it’s definitely got me thinking… Sea Kelp Seek Help Our minds are fascinating. Keeping them healthy is something that’s had much more awareness in recent years. But unfortunately, still carries some stigma. I think this maybe because it’s easier to deal with the things we see (eg. removing a splinter) than the things we can’t (eg. feelings, emotions and thoughts). ...

I was just woken for the obligatory middle of the night temperature and blood pressure check. My mind rattling around reminded me of this photo/inspiration, joining dots in my sleep…. Last week was a tough transition back to school for Piper. An encouraging chat with chappy, an uplifting word from a teacher and some prayer from friends turned her week around. One of her chores is to update this board, which she updated with this quote on the weekend. I know she’s in a better place when she does it without prompting. (The harder task is not to get Oliver to jumble it into something less inspirational). ...

Violet’s summary of chemoimmunotherapy is so very appropriate “my last few treatments have been a luxury compared to this” and there’s so many emotions and so much happens it’s hard to capture it all. Hopefully this post and photos will give some perspective of the reality. The Facts / 10,000ft View At a high level we’re following ANBL1821 protocol. However, Violet is excluded from the trial because it’s not her first relapse, which is ok because it gives us some flexibility (ie. push out cycles from to every 3 weeks to every 4 weeks). ...