The Journey on Seaboxes Blog

Playground Dedication

Sun, 18 Jun 2023 15:20:00 +0000

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.

The Hardest Conversation

Thu, 21 Jul 2022 17:25:00 +0000

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.

Sunsets

Sun, 29 May 2022 13:25:00 +0000

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.

Bedtime

Thu, 24 Mar 2022 19:30:00 +0000

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.

An Open Apology

Sat, 29 Jan 2022 10:00:00 +0000

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.

Grief Quotes

Wed, 12 Jan 2022 10:00:00 +0000

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.

Celebration

Thu, 21 Oct 2021 10:30:00 +0000

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 Box
5 October 2009 - 11 October 2021

Sea Kelp

Mon, 29 Jun 2020 11:16:00 +0000

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).

Focus on the Good

Tue, 02 Jun 2020 01:23:00 +0000

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).

Brutal ChemoImmunotherapy

Sun, 05 Apr 2020 14:23:00 +0000

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).

She went to hospital with hair on her head.

Wed, 27 Nov 2019 12:21:00 +0000

Bony growth has stopped. Yay.
But disease has progressed in her marrow. No! Not again!!
She’s quite unwell. When do you want to start? Tomorrow?
Premeds. Long lasting antiemetics. Diuretics.
Drip, drip, drip. Hyper hydration. Weigh the output.
Familiar friendly faces, in a way we’re home again, but not where we want to be.
Ahh, that wasn’t as bad as it could be.

Checkup time, 39 degrees, needing packed cells and platelets. What? That’s not supposed to be.
A simple temperature and a little sniffle. Not so bad.
Neutrophils less than 0.01. Sigh.
Neutropenia and a temperature. Not so good.
Drip, drip, drip. IV hydration. Antibiotics.

Nineteen

Sat, 20 Apr 2019 08:08:00 +0000

In a few days Violet starts the 19th cycle of chemo in her relapse protocol.

The duration of relapse treatment is now similar to frontline treatment (circa 500 days).

Although frontline treatment was more intense with side effects and inpatient admissions, relapse is just as (if not more) emotionally tiring. Using a water analogy, frontline was like trying to cross a waist deep running stream and relapse is like chinese water torture. With frontline we’d slowly wade our way through, step by step, after a while we could see the other side, the goal, the end of treatment. With relapse we don’t know where the end is, just when we think it’s under control, BAM, new growth, different treatment, a different goal.

7 Cycles Done, So What's Next?

Sun, 10 Jun 2018 12:48:00 +0000

Chemo Cycle 7 done, only 10 to go, maybe… Last week we found out a little more about what’s next. Before I explain that, I’ll point out Neuroblastoma is complex, this article describes it well:

Neuroblastoma is a spectrum of diseases with a wide range of clinical behaviors. Disruption of the normal maturation progression with different genetic drivers at different times leads to heterogeneity of tumor initiating cells. Interaction between different epigenetic and genetic factors complicates the task of defining a primary oncogenic driver or pathway for this disease. This results in a wide range of pathologies with highly variable responses to treatment.

You'll never really know

Sat, 31 Dec 2016 15:25:00 +0000

I partially wrote this to remember how tough some things were/are. I partially wrote it so others might ‘get it’, knowing some never will. It’s a slightly different view on my ‘I see you friend’ and ‘pre-admission tradition’ posts.

There’s a lot that can be inferred or assumed by a nice photo, forced smile or positive post, but there’s also a lot that people don’t see or feel. This post may be a little dark (which is not a place we usually are), but it’s the reality of some of my thoughts and days.

Pre Admission Tradition

Sun, 25 Sep 2016 22:03:00 +0000

Over the 300+ days since diagnosis, 100+ nights as an inpatient across 16 admissions there’s a few things I thought I’ve picked up about the way I feel leading up to, during and after a hospital stay….

A week before admission

Yeah! I think we're back to normal (or have adapted to the new normal), time to take on that next bit of renovation or gardening.

The week leading up to admission

As we subconsciously think about things (sleep deprivation, disruption to routine, juggling the older kids emotions), anxiety creeps in in various ways, usually by getting irritable for no reason.

Everything is normal, there is nothing to see here (kids can sense fear/worry/anxiety)

The (not so) hungry caterpillar

Sat, 10 Sep 2016 21:02:00 +0000

A little girl’s bald head reflects the light of the morning sun.

It’s Sunday morning. Her sleepy eyes open - pop!- under the warm blankets is a very skinny, scrawny (not so) hungry caterpillar.

She asks her Mum for some food. (This equates to yelling as if someone is attacking her to allow for the fastest possible reaction time).

Her mother asks what she wants to eat. “I don’t know” she replies. “Just food.”

Violet’s Diagnosis Story (the long one)

Sun, 14 Aug 2016 19:00:00 +0000

In August last year, 5 year-old Violet had a bout of gastro. Although the vomiting lasted only a day or 2, she continued to feel sick and lethargic in the weeks following. She complained frequently of ‘feeling sick’ particularly in the mornings before school and when in the car. She’d also complain of aches and pains just like most growing kids do. I would keep her home from school after tears in the morning and then she’d be fine all day. I put it down to separation anxiety, because in general she really enjoyed school. I was studying at the time and I thought maybe I just needed to spend more time with her.

Practice doesn't always make perfect

Thu, 21 Jul 2016 21:19:00 +0000

Once again we can look back and ponder ‘another day in the life’ (that we’re thankful is over!).

We started the day with a cranky and rather apprehensive little girl. I drove her in to the hospital for her second day of testing. The whole way to the hospital Violet displayed multiple personalities, ranging from singing happy ballads to groaning to lashing out in anger. (She even complained about not having breakfast which was rather comical because breakfast for her only happens once in a blue moon). Despite leaving 30 mins earlier than usual, we arrived late and checked in for her 3 tests for the day (MIBG, MRI and CT scan).

How to make fries

Wed, 15 Jun 2016 20:11:00 +0000

Day 2 of radiation done and dusted. As I sit back with a glass of wine and contemplate the day’s ‘adventures’, there are a few lessons I have learned.

After a morning so fraught with emotion, I felt as if I’d been sobbing for hours. No tears from me, but so many emotional outbursts and declarations of “this is the worst day ever!” from my little V, they just suck the energy out right out of you. With a little prodding, Miss V so succinctly explains that she’s feeling “very emotional with all the changes that have been happening lately” (ie. Daddy returning to work part-time). I’m so proud that she’s so in touch with her feelings (and wondering if she’s been reading my diary). After a heart-felt ‘d and m’, she is restored to her happy-bouncy self and the World is a better place. Today’s “not so bad after all” and I’m patting myself on the back for the crisis averted… Lesson no. 1: Don’t celebrate prematurely.

The Last 6+ Weeks

Sun, 12 Jun 2016 18:42:00 +0000

There’s no doubt the last month or so has been the hardest yet. It’s been like one of the ’normal’ 3 week cycles of chemo, but stretched over a 2+ month time span; much patience has been required to get some sort of normality back.

The bone marrow transplant/high dose chemo hospital stay was difficult, being in isolation, washing clothes at 70 degrees, wiping everything with alcohol wipes before entering the room, washing hands 1000’s of times and keeping Violet entertained was tiring. Since we’ve been home I’ve told a few people that it’s like having a newborn baby…

A Bilby Wedding

Sat, 04 Jun 2016 15:19:00 +0000

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).

Watch what you say

Tue, 03 May 2016 19:23:00 +0000

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.

5 months down… 8 to go

Thu, 14 Apr 2016 15:05:00 +0000

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).

The Treatment Plan

Sun, 07 Feb 2016 10:01:00 +0000

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.

The Journey So Far

Mon, 01 Feb 2016 05:59:00 +0000

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.

A Day in The Life

Mon, 28 Dec 2015 08:00:00 +0000

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.