Posts 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.

Statistics

Sat, 15 Jan 2022 10:00:00 +0000

THIS IS STILL A DRAFT, but the shell is here

Last month I got covid, even though I was double vaccinated I woke with a fever, aching bones a splitting headache and feeling terrible; it got me thinking of the hundreds of times Violet felt like that over the years. As she was constantly in pain, we wondered if she just grew to live with it and she knew no different.

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.

Eulogy of Violet Ruth Box

Thu, 21 Oct 2021 11:00:00 +0000

Violet Ruth Box was born on the 5th of October 2009. She was named after her Great Aunty Ruth, one if the most beautiful, nurturing souls you could ever meet, who passed from cancer while Violet was still growing in my belly. Violet asked many questions about Ruth over the years and they were amazingly similar in many ways, although they weren’t blood related and had never actually met.

Violet was a sensitive child. She felt so deeply. She often took on the names ‘Koala’ and ‘Barnacle’ in her early years because she loved to be held and carried. Touch was her love language and continued to be throughout her life.

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

Church Thanks

Sun, 17 Oct 2021 08:30:00 +0000

The Sunday after Violet passed, I had it on my heart to personally thank our church, I was able to attend worship then say a few words to the congregation.

Worship was amazing.

Colleen and I both had revelations at separate times from the same song - See a Victory by Elevation Worship. We hadn’t told each other, but during Violet’s final days we shared with each other, then our prayer group.

Jacarandas

Tue, 12 Oct 2021 12:12:00 +0000

The Monday night Violet died passed it rained for the first time in a while.

On Tuesday, Jacaranda Trees everywhere had flowered.

We took it as a sign that you’re in heaven smiling down on us!

Jacaranda Tree at the entrance C3 Church Bridgeman Downs

Violet's Hearse passed under the Jacaranda Tree at the entrance of church as she passed through the guard of honour on her journey to her final resting place at Pinnaroo Lawn Cemetery

Victorious

Mon, 11 Oct 2021 22:10:00 +0000

At 12 years and 6 days old, this evening Violet passed away at home.

I couldn’t believe in a God who would give my child cancer. I don’t. I believe in a God who loves deeply. I believe in a God who takes what the enemy meant for evil and turns it into good. I believe in a God who gives us the strength to get through. I believe in a God who will take care of my little girl for eternity.

Complexity of community reaction to DFV

Sun, 30 Aug 2020 05:16:00 +0000

Domestic and Family Violence is not ok.
Joking about Domestic and Family Violence is not ok.

Recently I called out someone for making a passing comment about “floggin’ a kid”. I knew it was more about “roughhousing to build a connection with a child” rather than actually physically flogging/harming/beating the child. But I couldn’t let it pass, I made comment, what followed wasn’t pleasant, but I’ll go into that later.

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).

Breathing [HDYDI - Part 6]

Sun, 28 Jun 2020 20:08:00 +0000

A few things happened recently where the penny finally dropped for me.
I was talking with someone going through a tough time, they were asking me what to do. I said “Breathe”. They responded “What?”. I proceeded to explain as simple as it sounds try and slow your thoughts and focus on what’s happening now by just stopping…
And…
Breathing…
Slower.

A few days later redkite was asking what would you say to parent who was just diagnosed. My response was, Breathe.

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).

Migrating from Wordpress to Github

Sun, 08 Mar 2020 13:32:00 +0000

NOTE: this page is still in development.. I am just testing some links ATM, thank you

I created this blog up as a place to write some lengthier detail about what’s going on in the box clan. The goals were:

simplicity: both in design and how to create posts
limited ads / ad free
use my own domain Wordpress was good for a while, the ad’s were minimal

In short:

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.

Simple Prayer

Wed, 02 Jan 2019 07:17:00 +0000

There’s a couple of prayers I say each day. They are simple for a few reasons:

So I can remember them when I’m tired and my brain is fried
So they kids can remember them

They maybe simple, but there’s depth to them.

For grace:

Lord God I thank you for this awesome meal and pray you bless it to our bodies to make us Big, Strong, Happy and Healthy.

The first part is fine, is the reason we're saying grace, thanking God for providing us a meal to enjoy. The rest has a little more reasoning... Big - a big person is humble, doesn't try to "one up" Strong - not physically, but emotionally Happy - mentally content Healthy - physically well

Every now and again I discuss with the kids what the prayer means so they have a deeper acceptance of it.

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.

How have you done it... Really??

Sun, 20 Aug 2017 19:34:00 +0000

One of the things people said earlier this year was “I don’t know how you’ve done it”. To tell you the truth, neither do I. If I think about it, if we didn’t, who would? The reality is we were in survival mode.

I started these posts around the new year when I was reflecting about our “Christmas Break”. It was then I realised we were full, we may have “done it” but we couldn’t take/give anymore. We’ve days we’re feisty, irritated and just need space/time/quiet to get through. I’d say Christmas was ok, it wasn’t good or great, its hard just having other people in the house, let alone for Christmas celebrations. It got me thinking that it’s hard to convey where my capacity is at and it’s unlikely others will ever understand and reflect on why I feel so full and overwhelmed.

Tips to other Parents [HDYDI - Part 5]

Fri, 18 Aug 2017 20:16:00 +0000

I read a post of a friend waking at 3am, thinking/worrying about their child and it reminded me of the early days with Violet. I wondered what would have helped me in the early days.

The top 4 things that keep me going are…

Music - much can be said about music, I have a couple of playlists
- My uplifting one - I listen to this in the car to/from hospital
- Violets fun list - stuff she can dance and sing to when she's up to it or we're traveling in the car
- Violets lullabies - stuff she listens to go to sleep
Inspiration - Pinterest is a great source for quotes images etc.
Breathing - the meditation type stuff I learnt at a mens group has helped heaps. I also watched a youtube on "the third space" it's been good to context switch and focus - reflect - rest - reset
Mates - some people will never get it, but good friends have allowed me to just call them and blow off steam

For each of these I have a strong God element to (as I shared in Part 1), which for me takes a huge burden away, but I know for some people that's not the case.

Other things that help, that vary on importance depending on the circumstance are:

Community [HDYDI - Part 4]

Thu, 17 Aug 2017 20:08:00 +0000

"it takes a village"

I can say I didn't know who was in my village until Violet got cancer. Thinking about it, the village is made up of multiple communities, who have all had different impacts:

Family - from visiting, to living with us to providing great support. Someone really enjoyed the facetime calls too
Friends - Surprise survival packs, car parking cash and random supportive texts!
School - WOW, food, picking up kids... I honestly didn't know what chappy's did, but now couldn't be more grateful
Church - prayer, food, house cleaning, lawn mowing
Work - passing around the hat, getting extended time off work, complete understanding when returning to work and supporting fundraising efforts
Hospital - nurses, doctors, occupational therapists, social workers, so many passionate people we got to know.
Paediatric oncology community - No one really knows what you go though, except those closest to the same fire as you. We've met some incredible parents in the oncology wards!

Mates [HDYDI - Part 3]

Wed, 16 Aug 2017 19:56:00 +0000

This time around on the HDYDI (How Do You Do It) series I focus on me, a man, and what I think has helped me along the way. My hope is this will give other men ideas on how they could set themselves up with the support they need to “do life”.

I credit a lot of why I’ve been able to cope to something I’ve gone to over the last handful of years, a mens night. It’s a simple way for blokes to get together and share life. The easiest way to explain what I’ve got out of the group is by describing how it’s run. It’s evolved over the years, but in it’s current form this is what goes on:

Marriage [HDYDI - Part 2]

Tue, 15 Aug 2017 19:54:00 +0000

When Colleen and I got married we became equal partners, for better for worse, till death do us part. We made the commitment to stick by each other and see things through, no matter how difficult they get. We also come from good stock, parents and grandparents setting a fabulous example with marriages decades long.

There’s no doubt Violet’s cancer has stretched us waaaay beyond where we ever thought. But our love and commitment for each other has never been deeper. Our faith and how its grown and been shared through this has played a big part of this. Our marriage is about equal partnership and respect for one another, male chauvinism has no place and no task is gender specific cooking/cleaning/mowing/hospital visits is shared.

God [HDYDI - Part 1]

Mon, 14 Aug 2017 19:51:00 +0000

A lot of people commented on how strong we are through Violets cancer journey; one of our friends early on created this artwork which encompasses one of the main feelings we had.

We are carried by our Lord and Saviour Jesus Christ.

I had read about footsteps in the sand and seen verses about being carried, but never experienced it until now.

I don’t believe God causes the trials/challenges in our lives but he carries us through and promises greater glory on the other side. I’ve previously posted a tongue in cheek look at the many verses about this.

Verses to get you through

Mon, 17 Apr 2017 15:16:00 +0000

It’s no secret we’ve spent a lot of time in the Bible during Violets treatment. Many Bible studies, devotionals and Pintrest sessions lead to the list below. You may notice some duplicates below as Bible versions bring out different emphasis. I’m sure I’ve missed some verses but I hope you find some inspiration in His word, just as we have.

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1:2‭-‬4 (NLT) - http://bible.com/116/jas.1.2-4.NLT

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.

James has it WRONG!

Sun, 20 Nov 2016 13:32:00 +0000

James 1:2 has it seriously wrong…

when troubles of any kind come your way, consider it an opportunity for great joy.

Troubles are an opportunity for great joy!! I'll give you troubles! My child has cancer, where is the joy in that? - Watching her much loved hair fall out.... Joy! Err no. - Catching vomit... No joy there - Preparing her for yet another procedure... what can bribe, err reward her with? Joy? no. - Dealing with the constipation/diarrhea pendulum... Umm maybe the joy of hidden in one of her nappies. - Sleepless nights.. Joy joy joy

Let me read on (in James 1:3-4), maybe James was joking… They do that in the bible!…

The most important personal trait

Sat, 19 Nov 2016 07:39:00 +0000

A trait that I highly rate is humility.

We live in a “look at me” and “look at what I have” society where I think humility is lost.

My take on the word is, someone who is humble, no matter what status you have, or where you are, you have time to listen stand up for and help others. The dictionary has a slightly different take on it..

I don't know what to say

Fri, 18 Nov 2016 20:50:00 +0000

A couple of colleagues pulled me aside at different times over the last few weeks and said something similar to “I really feel for you, I’m sorry I haven’t said anything until now, but I didn’t know what to say”.

To tell you the truth, it wasn’t until recently that I thought about the way I would have reacted if the roles were reversed before Violet got cancer, and it would have been very similar.

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)

I see you friend...

Tue, 20 Sep 2016 21:17:00 +0000

I see you friend… Swimming with kids… My child has a central line, so showering or swimming is not possible.

I see you friend… On holidays… My holidays have been all used up, filled with sleepless nights caring for my child in hospital. My last holiday was before she was diagnosed, wondering what was wrong, dealing with her whinging.

I see you friend… On a road trip / flight hours away from home… My Child is only allowed to be within an hour of the hospital

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.”

HospitalHack 4 - Three Point Plan

Tue, 06 Sep 2016 20:35:00 +0000

This hack is especially important while your child is nauseous!

The three point plan is simple:

At any time, have three vomit bags visible.

You never know when you'll need it!

HospitalHack 3 - Footwear

Mon, 05 Sep 2016 20:19:00 +0000

What happens in hospital, stays in hospital.

Requirements:
- Warm feet
- Footwear that's easy to take on and off to get in and out of bed
Solution:
- Socks
- Thongs

I'm not the only one, when lining up at the ~~trough~~ food cart I looked down, a mum in the next room was doing the same.. Great conversation starter!

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).

HospitalHack 2 - Pollyanna Positivity Principle

Mon, 09 May 2016 20:46:00 +0000

Doing the cancer walk with your child is not all roses.. It’s tough! It’s hard to stay positive and look at the upside. As per a previous post, attitude is transferable, if you’re feeling one way, your child picks up on that and runs with it too. So in this Hospital Hack I share how I (try to) stay positive.

While in hospital we’ve watch a lot of movies, it’s a great way to pass time with your little one. Anyhow while watching the 1960 classic Pollyanna something struck me as a good thing to do, The Glad Game. It’s as simple as finding something to be glad about, no matter what the circumstances. Pollyanna plays this game when everyone is whinging about it being Sunday, she says she’s glad it’s another 6 full days until it’s Sunday again.

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).

HospitalHack 1 - Coffee

Wed, 13 Apr 2016 03:12:00 +0000

I love coffee, and it’s awesome the hospital provides coffee, of the Blend 43 variety. I’m not a coffee snob, but Blend 43 doesn’t count. Well, Blend 43 counts if you really need caffeine, then it’s bearable, only as a double shot with sugar (ok, that’s a little snobbish, and I feel a little bad knowing it’s roasted down the road). Anyhow, my preferred coffee is an small (8oz) double shot skinny latté with no sugar. I do like it slightly bitter, so if there’s a choice of coffee shops I’ll hunt to find a blend I like.

You know you're a father of a 6yo girl with cancer when...

Tue, 05 Apr 2016 02:04:00 +0000

Over the last few months of being at hospital I’ve created a list of things that indicate I’ve got a girl with cancer:

Vomit bags decorate the house
You can talk the medication lingo Ondanse, Max, Dex, Loraz, Oxy, Lasix, Cyclo, Vinc, Dox, Cisplat …
Don’t go to the beach or swimming as you know the central line can’t get wet
A ‘day pack’ now includes a medications you know the ED don’t regularly carry
You know your childs’ name, date of birth and allergy status
It’s not uncommon or uncomfortable to have conversations about wee poo and vomit (much like when you have a baby)
You know how to be a patient patient, you’ve jumped the queue before when things were serious, so you know why there are people ahead of you.
Much patience and flexibility is required to get your child to do what you want (choose your battles, look for distraction/rewards, give limited choice)
You know your childs’ name, date of birth and allergy status
You know your childs hospital ID(UR) number
You not only know all her stuffed toys names, but their attitudes
Know that sometimes it’s easier to hook up NG feeding than have the one hour I’m hungry but I don’t know what I want conversation
Have a hospital day bag always half packed ready to go
Have a check list of the things not to forget for a hospital day trip
You know your childs’ name, date of birth and allergy status
Know that the car park full sign means you’ve still got 90% chance of finding a park (even if it takes 15 minutes to find it)
Drink sensibly and keep under the limit, in case you have to drive back to hospital
Know what is like to sit in the back seat of your car
Can scan a room full of kids, pick out the one with a runny nose and divert your child from going anywhere near them
Know that it takes at lest 2 hospital ’towels’ to dry yourself
Wash your hands before, during and after eating
You have a three vomit bags in site at all times
Stickers, the prize box and playdoh are currency
Know the smell of an antibiotic wee
Eat smelly food outside the room.. Unless you don’t mind catching vomit while eating.
Don’t eat spicy food, just in case the after effects cause …vomiting
Are skilled at the art of waking from a deep sleep, jumping out of bed and catching vomit
Think you’re good at ‘biting your tongue’ when you’re tired and cranky and have an opinion on return everything
You know that you can’t play Happy Chef in the iPad when she’s nauseous
You know the difference between a cough and a the start of a vomit … ahh.. No, no you can’t
Paper towel is the official note paper of nurses
You can cook bacon and eggs on an underpowered sandwich toaster without fire alarms going off
Blend 43 tastes ok if it’s double shot with two sugars and you really really, really need to be caffeinated
Have no trouble discussing a bowel motions and what a poonami and overflow is with the doctors
Can flick a vomit bad open on one movement of the wrist
Just like camping… Use a cup if you forgot the bowl; a spoon makes an ok fork if you can’t find one
As with everywhere.. Build a relationship with the receptionist and cleaner, they are valuable people to know

This is the start of my #HospitalHack series of posts, over the coming weeks/months I hope to share how I’ve made our hospital admissions a little more bearable.

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.

How Can I Help?

Wed, 03 Feb 2016 06:08:00 +0000

We’ve been asked many times how can you help. We’ve actually been overwhelmed with support, so much so that we created a facebook group that is no longer use to organise everyone.

The reality is, for now, we feel we have enough physical support (a couple of meals a week, lawns being mowed etc.).

Spiritually, words of encouragement and prayer will never turned down. Follow my Pintrest board or Spotify playlist to see what I’m reading or listening to. Prayer points and focused prayer around the following is appreciated:

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.

Feature images

Mon, 01 Jan 0001 00:00:00 +0000

Hopefully you will find enough information about how to set images in your blog here. This is an example of a post which includes a feature image specified in the front matter of the post. The feature image spans the full-width of the page, and is shown with the title on permalink pages:

feature-img: "assets/img/feature-img/desk-messy.jpeg"
thumbnail: "assets/img/thumbnails/feature-img/desk-messy.jpeg"

You can also use a thumbnail, a smaller version of the same image to improve loading of the page. The thumbnail will also be used when you share your article on other platform (linkedin, whatsapp, facebook, …).