Blog Archives - Love Dexter

Spoke Covers for my Wheelchair

9/28/2016

I want some cool spoke covers, for my wheelchair wheels.
*This is me in my walker, but imagine covering the spokes with a cool picture or colourful pattern!*
(With spoke covers, the whole side of the wheel gets covered.)
We know we can order some online, but we're wondering whether any local business knows how to make wheelchair spoke covers.

If someone knows how to, we'd love to talk to you!

Maybe I could get Batman wheel covers, or Spiderman or cool spirals... I'd love some for #RunWollongong and Halloween!

#cerebralpalsy #wheelchair #spokecovers

Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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A Sister's Birthday

9/26/2016

On the weekend, my baby sister turned two.
She's a bit noisy, but pretty cute, so I'll forgive her!
She is very caring towards me, even though she sometimes falls on me.
She is helpful and tries to move me when I am stuck.
She loves me special equipment and she likes to encourage me with my therapy.
Sometimes, she just holds my hand.
She is growing up to be a strong, determined, empathetic and caring girl.
(The other Noisy Sister took this photo. She is pretty clever!)

For My Sister
My Sister Knows
Equal Love
I Push
My Sister & The Beach
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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Self-Feeding

9/25/2016

It gets messy, but I love it!
It takes a lot longer and it needs a lot of patience, but I love it!
I love it when I can try to feed myself!
I feel proud.

Dexter’s Feeding Efforts Jan15
High Calorie Diet
Walking Until It Hurts
How a Dollar Looks, for Dexter
My Unicorn Friend
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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We Got The All Clear

9/23/2016

We had a bit of a health worry this week!
We had direct exposure to whooping cough. We have been immunized against this, but because we have been a bit sick and coughing, Mum thought we should get checked out.
The doctor put us all in home based isolation, until our tests came back
We sent Mum and Dad a bit crazy! We were not allowed to go anywhere!
But thankfully, we were given the all clear today! We are out of isolation!
It made Mum and Dad worry, not so much about us, but about our friends and family who we might have accidentally exposed if we had of been positive. That wasn't a nice thought for them...
Thankfully we are all up to date on our needles (immunisations are scary times for us - I've stopped breathing after two lots of immunisations!).
Look out, everyone! We're back!

Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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SnapChat Dexter!

9/22/2016

Mum got a bit bored today.
She was playing around on Snapchat... and, she did this to me!

Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
Return to Home page
Find me on: facebook twitter instagram pinterest youtube

Introduction Video for Teachers & Grown Ups

9/20/2016

Soon, I'll be starting Big School!
That's so exciting, and a little bit daunting.
How will it go?
Will I like it?
Will I make friends?

We know it will be a big thing for my new school... I am a bit different to most kids my age!
So far, we've been so impressed with the way the school as approached my entry to the school.
The teachers are sure to have a lot of questions about me, and my medical history.

And so, we created two new you tube videos. They are mostly photos with some text about me.
We figured, if we had something on you tube, new teachers could look at it and get a bit of an idea about who I am, what adventures I have had and what help I might need.

One video was designed for the teachers and has more of the medical history and more complex language. It's the longer of the two videos.
The other video, we thought might be good for kids and their parents. We thought we could introduce me, and show all the things I can do, and explain some of the things I need help with.
Here's the grown ups' version:
(No music - but some short videos)
#cerbralpalsy #corticalvisionimpairment #hepatoblastoma

Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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Find me on: facebook twitter instagram pinterest youtube

Kisses for Mum

9/18/2016

I don't always give kisses now - I am 5!
But sometimes... I'll let Mum have one.
(We have the same nostrils!)
If you watch with the volume, you'll hear me being a typical boy!

Flying Fox Fun
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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Find me on: facebook twitter instagram pinterest youtube

Supporting Run Wollongong

9/16/2016

Soon, we will be joining the Run Wollongong crowd.
We've entered the 6km walk.
This will be our community fundraising event for 2016.

You can join us.... Just look for team Love Dexter. Everyone's welcome!
But, if you'd rather stay home in your pyjamas, you can be a virtual runner.... you can sponsor me to run for you.
But... I will be in my wheelchair, so... if you really want a 'runner', you could sponsor one of the Noisy Sisters!

The reason we chose to support Run Wollongong is that 100% of the registration fee goes to the Children's Ward at Wollongong Hospital.
I have sure spent some time there in the last five years!

The nurses have all looked after me.
They looked after the Noisy Sisters, too.
The nurses got to know us, when we pretty much moved in and spent time there every week while I was having my chemotherapy treatments.
We've spent a lot of time in isolation rooms. We've been in lots of the rooms.
The nurses have given us space and trusted Mum and Dad to care for me... and, we have watched their eyes and trusted them, when they kept us updated on my progress.
For a while there, we knew the nurses by name. And, they knew me! Some still remember me.

So many of the nurses went beyond their duty, to make sure we were as happy and comfortable as possible... And so, we want to give back.
We want to complete the six kilometre Run Wollongong Walk, to help raise money for the Wollongong Hospital Children's Ward. This is our 'big' fundraiser this year. We'd love it if you could find Team Love Dexter on their website and throw us a few dollars. The money is going to a very worthwhile place!

Click here to support Team Love Dexter
in the 2016 Run Wollongong 6km walk event.
Thank you!
- Register Now - Run Wollongong - Virtual Runner - and find my name 'Dexter'.

You just never know when you will spend some time at the Wollongong Hospital's kid's ward. (Coincidentally, the day we join the fun run will be the fourth anniversary of my surgery to remove the cancerous section of my liver.)
#taxdeductible #charity

These are OLD PHOTOS of me!
The Run Wollongong photo was taken from the Run Wollongong facebook page.

How to be a Virtual Runner (make us to do the walk for you!)
Join us - Wollongong, 6km walk, Team Love Dexter (all welcome!)
Support us or join us, if you can!

Scan Results... Clear!

9/15/2016

We got my cancer scan results today...
I am still all clear!
I still have something showing in my spleen, but they don't seem too concerned at the moment! The shadowing was there last scan, and it has not changed in the last year.
I don't have to have another scan or have bloods taken for one year!
And then, if I stay clear, that will be my last scan! In one year, (all going well!) I will be in remission!
Mum took me for a celebratory ice cream once we got back from Sydney!

#hepatoblastoma #childhoodcancer #survivor #cerebralpalsy

September = Childhood Cancer Awareness Month

9/13/2016

September is Childhood Cancer Awareness Month.
We've posted about this before, but it feels wrong to let September go by and not make some noise for the awful journey childhood cancer is.
Just last week, I had my annual scans to check my cancer cells are dead. We should get the results this week. We don't talk about it much, but we worry. Of course we do. We know so much more now. We know how bad it is. Assuming the results come back clear, we will feel reassured and light, for a little while.
I'm lucky. My cancer was found my chance. I had a scheduled appointment with my paediatrician. He found it. He found my cancer. He called it an 'enlarged liver' and sent me for tests. (Without him, my cancer would have continued to grow and spread and grow and my fight would have been much more difficult. Without him, we may have found the cancer too late, and my journey may have ended very differently. We'll be forever grateful.
At the tests, they said it was a mass that needed treatment.
On the oncology ward, they said it was cancer, then set out to determine just which type of cancer it was.
My oncologists discussed my treatment plan and finally listened as Mum and Dad spoke through tears of fear and frustration. They chose a chemotherapy plan that would not cause hearing loss. They decided to save my hearing, because of my parents and because of my vision impairment.
And, they saved me.
It's awful; childhood cancer. Its an awful that is so bad you cannot understand it until you have lived it. It's more than cute, smiling bald kids. It's all 'the bad things' heaped with anger, fear, frustration and exhaustion.
But, we made it. And so, we continue to spread awareness.
September is Childhood Cancer Awareness Month.

See the cancer? The redness, the rash, the hard stomach, tiredness. Those were the signs.

In these videos, you can hear Mum tell my story at a 2015 Relay for Life Hope Ceremony:

Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
Return to Home page
Find me on: facebook twitter instagram pinterest youtube