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Happy New Year

12/31/2013

Goodbye 2013
Welcome 2014

I watched my first fireworks. Man! They were noisy, but I loved the lights in the sky!
And, I saw some beautiful Christmas lights on the houses. They were great!
It was nice to be with Mum and Dad this year. Last year, I was home sick and Mum and Dad went to hospital, thinking my sister was coming early.

Our hope, is that 2014 is a healthy, happy year.
Be with the people who love you...
the people who make you stronger...
the people who push you to be better, but support you in every way.

Smile at people and thank them for the things they do.
Take time to see the beautiful things around you...
the rainbows, the flowers, the clouds.
You just never know what's around the corner.

Happy New Year
Dexter xxx

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Dexter's 2013

12/31/2013

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For some, 13 is lucky. For others, 13 is unlucky.
For me, 13 is surely significant.
Overall, it's been a pretty good year,
with a few little bumps along the way.

Here’s a recap of my 2013:
(click on the green writing for more information)

JANUARY

January was pretty huge! My little sister couldn’t wait to meet me and arrived a month early. She had a pretty rocky first couple of weeks, until she discovered she liked ‘food’! We were close, right from the start and it was nice for me to be the one visiting the hospital, instead of being the patient!
An awesome day was the 10th of January, when my oncologists said I was clear of cancer! It was a happy day in our house! By the end of January, my hair, eyebrows and eyelashes were starting to grow back.
I started to eat cheese and bacon balls, to teach me to chew.
We got my modified pram, which meant Mum could finally leave the house!

FEBRUARY

Mum and Dad were seen on the TV show ‘The Block’… They were woken when Josh set off the alarm, while they were working at the Ronald McDonald House in Randwick.
I finally got my chemotherapy cancer cords out! (Central Line) Finally, I could really splash in the bath again! The cords did get an infection, right at the last minute, so I was in hospital on antibiotics, again! I was ambulanced to Randwick.
I moved across the room for the first time! That made me a crawler, or at the very least, a mover.
We discovered I’d developed an egg allergy, as a result of my chemotherapy treatments.
I started to learn to sit on my own.
We wanted to thank our community, so we asked Ellen to throw us a party. She didn’t get back to us!

MARCH

March is Cerebral Palsy Awareness Month, so we wrote some blog posts:
Cerebral palsy and my vision, cerebral palsy and intelligence, cerebral palsy and eating.
This is a bit embarrassing, but in March, I started to do poos on the toilet!
I got sick again… back to hospital. First, they thought it was constipation, but it was a bit worse than that! I went in my first helicopter, but was high on morphine, so didn’t get to enjoy the ride!

APRIL

We wrote a post for World Premature Birth Day.
We were getting lots of stares at the shops, so I used a sign for a while.
I went back to hospital with a fever and breathing issues, but was home quickly. We learned I can now be given panadol, since I am no longer a chemo-patient.
While I am still mostly non-verbal, I communicate through sounds and gestures and facial expressions.
Some days are hard, especially for Mum who is with me all day. I don’t give her much chance to have a break! Here’s one of those days.
I was on TV and in the paper – that was cool!

MAY

I had a birthday!

I finally got my trampoline! (remember my facebook photo… If I get 1000 likes…?)
We acknowledged the anniversary of some of my worst days… premature birth, brain damage diagnosis, vision impairment diagnosis and cancer detection. (May and June are hard months for us.)
We raised money for the Cancer Council, through our Relay for Life and I spent my first night sleeping in a tent!
We shared a story about my daily physiotherapy exercises and some of the equipment I need.
I trialled a mobility walker and took my very first independent step!

JUNE

I was back in hospital with pneumonia.
We started collecting Dexter’s Mates names for the 2013 Truck Convoy. (Who’s in next year? Check out the Dexter’s Mates webpage!)
And, there’s footage of me sitting… all by myself!
I got good at standing against the lounge chair!
And, we entered the Sunsuper Dreams contest to win $5000…. My goodness, what a month that was! But, with everyone’s help, we won! Thank you all so, so much for that! I was on the news again and in the paper, too! This shows how much love and support there was for Dexter while the Sunsuper Dreams contest was underway.
Another post about daily physiotherapy and the painful stretches I have to do each day!
My website turned 1 year old and reached 36,500 hits. Wow
My you tube channel was set up… and then I got a twitter account, too!

JULY

My sister was getting cute and cheeky by July… so we wrote about ‘equal love’ for her and I… nothing different, even though I have cerebral palsy and my vision impairment, I still need the same fun and attention.
I shaved my hair to acknowledge the anniversary of my chemo-shave. Then, we drew pictures on the bald bit for a week.
I met Melissa, who is a little bit like my big sister.
I got my own walker, from a generous man. What a day!

AUGUST

We played around with some shirt designs, to help teach people not to stare at me.
We wrote about Post Traumatic Stress Syndrome, common to families who spend time in the neo-natal intensive care unit… and spending as much time in traumatic moments as we have.
I learned to get myself off people’s laps, so I could play on the floor!
My cerebral palsy was reassessed, which only made us feel down, again. Nothing changed, though.
I got my little room – to help me learn to see and to have a quiet place to rest.
I got my new standing frame, which I desperately needed, from the Sunsuper money and the Kiama Lions Club. I had fun in it!
Jane and her husband helped raise money for me through a Peace Concert.
I went on a Camp Quality Camp and Mum got a surprise pampering day.

SEPTEMBER

I got my own pair of theratogs, thanks to the beautiful Karen! They are to help me learn to use my muscles and we noticed an immediate improvement in my progress!
I got sick and ended up in hospital again – aspiration pneumonia, this time. I swallowed some saliva in to my lungs and got pretty sick!

OCTOBER

World Cerebral Palsy Day inspired us to write a post about me and how cerebral palsy impacts on my every day life.
I had my first ride in a beach buggy/wheelchair!
I was in the paper and on the news again, and Mum went back to work for a couple of days.
We acknowledged Carer’s Week, although Mum is not officially recognised as my ‘carer’. She should be.
I showed interest in feeding myself!
I actually made it all the way to the beach road in my walker, which was awesome for us!
We asked if anyone had a question about my cerebral palsy and answered the questions as best we could.
We got brave and trialed my walker at the shopping centre. I loved the smooth surface, and did really well!
I had a vision assessment.

NOVEMBER

This month started with a bang, when we found out I would be needing surgery again soon.
I had another scan (to make sure my cancer is still dead) and we enjoyed a weekend at the Coogee Bay Hotel, after Mum won a contest through the Randwick Childrens Hospital. She had to share a treasured memory, and shared the one of me in my walker.
We finally expressed how overwhelming it is to be loved and supported by so many people… saying Thank You is not always an easy thing, and sometimes, those little words do not explain how you really feel. We really are overwhelmed and so grateful.
I was in the paper again.
We supported McHappy Day, again. I had my first taste of a McDonalds chip!
I went to my first Kidz Wish Christmas party and loved the lights and noise!
Melissa held a fundraiser for me, and it was a lot of fun. From it, I got a sleepform mattress, which I will need after my surgery. I also got a bike and will get some intensive therapy in Adelaide in 2014.
And, there was a convoy! And another convoy video… And a fight for media attention!

DECEMBER

The Brooding Italian café in Kiama held Brewing It For Dexter Days on each Friday in December. $1 from every coffee sold went into a dish for me. People threw in money and all the staff tips were thrown in, too. It was really incredible!
A beautiful family in Berry set up some Christmas lights in my honour, and left a tin out the front for people to put money in for me. It was so amazing! We met the family and they are lovely. Thank you!
We wrote the “Who is Dexter?” post, which summarises my story so far.
I had to get my immunisation needles again because the chemotherapy killed my immune system… I’ve stopped breathing when I’ve had these needles before, so this was a scary time!
I got a bike! Can you believe it? A bike!
My website turned 18 months old, and we reached 100,000 hits! Thanks for reading my story, and for helping us raise awareness about cerebral palsy, childhood cancer and vision impairments.
We learned tricks to help me learn to see.
We celebrated my one year since chemotherapy stopped anniversary.
I went on my first train!

Here's hoping 2014 brings lots of health
and happiness, love and progress.
Sloppy kisses xxx

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Sister For Sale

12/29/2013

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Don't you just love my shirt?
I think it's great!

"Sister for Sale"

That'll teach her for crawling
all over me and
stealing my dummy in the mornings!
And, she is so noisy!
She's in to everything and she thinks she is so cute. She's pretty cheeky!

Let us know if you want her!

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Merry Christmas

12/25/2013

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Merry Christmas! xxx

We hope everyone is having a fun day.

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Our 2013 Christmas Photo

12/23/2013

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My first Christmas, I had a photo with Santa.
I was still very tiny.
This year is my sister's first Christmas, so we got a Santa photo.
This is it:

It's a bit funny!

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Early Christmas Love

12/23/2013

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Not long until Santa comes! I've been a bit spoilt already this year!

My friend Kylie gave me a very soft teddy & a crystal for health!

Mum got a call from Camp Quality
- a young boy had left a gift there for me (via Marty from the radio).
He is 11 and wanted me to have
a special present which will help me when I'm in hospital.
He is a special boy. Thank you!

Mandy gave me the coolest ball!

Aunty Eggs sent us something, but mum won't let me open that yet!

I was also spoilt by someone
I don't know. They sent me this
but they didn't leave their name.
To whoever you are,
I say thank you! xx

Last Christmas Eve, I had my last platelet transfusion... which meant I felt a bit sick on Christmas Day.
This year, I'm much stronger,
healthier and happier.

To all my friends, thank you and have a merry Christmas!

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Read Overwhelmed
Read about my next surgery
Read all about me in one place

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My Christmas Photo Card

12/20/2013

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Mum started sending this photo to people.
She printed out 30 of them, thinking that would be too many!
She had to go back and print out more!
All up, we have sent about 40 of these photos to people.
We're sure we've missed a few important people along the way.
If we missed you, please accept this as a Christmas Photo Card from me.

To each and every person who has followed my story
and supported me through my cancer journey or believed in me
as I developed my strength and improved my vision...
to everyone who loved me...
We hope you have a beautiful Christmas, filled with love and laughter.
xxx
Dexter, Charlotte, Lenice and Andrew

Here are some of the photos we sent:

What a lovely surprise to find your cheeky little face in the letterbox today Dexter. Thank you for sending your photo my way. You are sitting next to Santa on my buffet.

What a gorgeous pair to have on my fridge! Wishing Dexter and his family the most joyous Christmas and New Year xx

Thank you Dex, love the Christmas photo you guys sent x

Look what we got in the mail

Us too - it got pride of place
on our fridge until I choose
one of my favourite picture frames

Me too - currently sitting on my dresser in a lovely silver frame.

Do you like my stocking picture?
My twitter friend Kate made this for me. And, my twitter friend Coalition Man

has spoken with Mr Claus -
and he told him I've been good!
Not long now! — feeling excited.

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Paolo's Brewing it Again!

12/20/2013

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Today is the third 'Brewing it for Dexter' at the Brooding Italian.
$1 from every coffee sold today is going to help pay
for some extra physiotherapy sessions for me.
We already have Zoe booked in for extra sessions before my surgery -
thanks to the money from these #BrewingitforDexter days.
This was us last week. We will be there again today.
Mum's looking forward to a coffee because we kept her awake last night!

Paolo and the staff at the Brooding Italian are being so generous.
They decided to do the Brewing it Days on Fridays - their busiest day.
And, all their tips will come to me, too.
It really is a lovely place.
Make sure you say hello to Paolo, if you drop by.

**There have already been two Brewing it for Dexter Fridays.
This is what Paolo said last week:
Brewing it for Dexter last Friday raised another $512.45.
Which bring the total so far to $1013.75.
What a beautiful, generous bunch of people you all are.
For Dexter we say, Thank you, thank you, thank you.
May all the good you shared, come back to you many times over!!! Paolo

The generosity of people is so heart-warming. xxx

If you're on facebook, head over to the Brooding Italian's page
and give them a like. Find them here.

Meet Zoe, my physiotherapist
My next surgery in in January 2014
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18 Months - How We've Grown

12/19/2013

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Yesterday, this webpage marked a milestone. It's been 'live' now for 18 months.
We were hoping we might hit 100,000 hits, but we fell a little bit short.
Yesterday, this webpage had about 99,300 hits.
That's pretty amazing for a little boy's webpage.
We're pretty confident that many of the hits are 'repeat offenders' -
People who are following Dexter's journey...
People who come back every few days, just to check up on him.
Everyone wants their children to be loved and we are no different to that,
so to those people, we say thank you.

While we were chasing 100,000 hits... we see this as a 'double-edged sword'.
Sometimes, we worry about Dexter and how much people know about him.
We worry that our whole lives are being played out on this webpage
and on social media.
We worry that we might be doing the wrong thing.
If Dexter didn't have cerebral palsy... this webpage wouldn't exist.

So, how did it all begin?
We didn't plan for Dexter's story to be this big.
It started on facebook. Our family knew Dexter had 'a mass which needed to be treated' and he was in Randwick Children's Hospital, so doctors could determine what the mass actually was. That was an absolutely awful time.
There was nothing we could do to help Lenice and Andrew.
We just had to wait and worry and worry and wait. We hadn't gone public with anything. We were silently hoping there would be good news and they would be sent home... but then, it was Dexter, and we figured we were facing cancer.

We thought Lenice and Andrew needed a smile, so we 'played a trick on them' on facebook. We posted a comment, saying we were trying to fill Lenice's facebook page with jokes... dodgy jokes, Dad jokes, funny stuff. We asked people to join in and post jokes with us... and they did! Lenice's facebook page was smashed with jokes and it was clear that, with Dexter's upcoming cancer journey, he would need his own page... his own place where jokes and fun things could be shared.
And so, Dexter joined facebook.
And, people were amazing.
Whenever Dexter was in hospital, there would be jokes and pictures
and little hellos posted every day. And then, when he was home, his facebook page would go a little quieter... until he headed back to hospital again,
and everyone shared more photos.
Lenice and Andrew were smiling... in the children's oncology ward...
beside Dexter's hospital bed, while he was undergoing treatment for his hepatoblastoma (liver cancer) - Lenice and Andrew were smiling.
The jokes were working.
The jokes also set the tone for Dexter's facebook page and blog. It took on a fun, hopeful, positive approach and this has been maintained. Sometimes, pages for children like Dexter become places filled with prayer and bible quotes.
Dexter's Pokky, Len, no doubt prays for Dexter. He grew up in a strong Catholic family and his belief is still strong. And yet, he has never pushed prayers on to Dexter. He is quiet and respectful and we admire him for that.
It's hard for us to believe that someone decided Dexter needed to endure
all he has suffered and what he is yet to suffer. It's hard for us to believe that we were chosen because we are strong enough. We're no stronger than anyone else, we've just been tested much more than most. We've learned to be strong.
And so, we've kept a cheeky, happy tone.

Dexter was born nine weeks early.
For many premmie kids, they get bigger and stronger and they can almost leave their premature story behind them. This is Charlotte.
She was four weeks early,
but is reaching all milestones and has put on the weight she struggled to gain in her first weeks.

Dexter's premature birth is linked
to his brain damage.
His brain damage is linked
to his vision impairment
and his cerebral palsy.
His cerebral palsy is the reason
this blog and webpage
have been maintained.

Dexter's cerebral palsy is severe. It affects all four of his limbs.
It makes speech very difficult. His cerebral palsy is incredibly frustrating
and frequently heartbreaking. It's unfair and cruel.

Lenice's back suffers from the constant lifting of Dexter. Her knees are being damaged from the bending, lifting and twisting while she carries Dexter.
Lenice and Andrew's house is filled with expensive equipment... huge, bulky pieces of equipment. Dexter needs all of it... he'd benefit from having even more.
Dexter's cerebral palsy is never far from their thoughts. It will never go away.

And so, we maintain this webpage... and hope we are doing the right thing.
We sometimes worry about identity theft and we sometimes worry about people using Dexter's photos and story for their own personal gain.
But, the positives remain stronger than the worries.
When Dexter first began to use his walker on the side footpath,
people stared openly, but quietly, as they walked by.
Now, people are passing Dexter and saying hello... and using his name.

People have come up to Dexter in public places, to say hello.
They have recognised him, having long ago fallen in love with his determination
and strength and are delighted at the chance to finally meet him.
They always comment on his eyelashes.

Before they knew about Dexter, would they have had the confidence to approach a boy with cerebral palsy... a boy who often drools, even though he is two and a half? Would they have had the confidence to approach a boy who's mouth is often open, in what we call his 'cerebral palsy face'? Or, would they have simply stared
and wondered what was wrong with that kid?
The stares are hard to take. We feel them... they no longer hurt as much,
but they make us feel very protective of Dexter
and they make us a little frustrated and resentful.
The unexpected approach from a stranger, who suddenly starts to talk to Dexter
is a little over-whelming and we are learning not to be too shy.
These little visits make us feel happy, to know Dexter is being seen as a little boy, not someone with cerebral palsy. They give us hope for his future.

We know some family and friends have approached other people
living with cerebral palsy. They've gone up and said hello.
They've mentioned Dexter and his cerebral palsy.
They've no doubt made other families smile...
knowing for just a moment, they were not being stared at and wondered about....
they were being greeted and chatted to.
If we can raise awareness and acceptance of people living with cerebral palsy,
if we can show that people with cerebral palsy
are cheeky and clever and determined...
if we can help people look beyond disabilities and see the people like Dexter...
if we can do that, this webpage is definitely worth it.
If we can raise awareness and understanding of Dexter and his cerebral palsy
within his own community, we will be paving a smoother path for his future.
Dexter will always get more than his share of stares.
His sister will also have to live with these stares.
But, if people know him.... know his story and understand his challenges...
if they know how much he works at doing the 'little things'...
they will learn to see Dexter...
and not the kid who looks funny and talks and walks 'funny'.
(Because we are going to work our guts out
to get him on his feet and using his voice!)
If we can make Dexter's future easier, this webpage is worth it!

This webpage and Dexter's facebook page helped us win $5000, so we could purchase expensive equipment for Dexter... a 'boring' standing frame -
which is extremely important to his development... equipment which funding was denied for... equipment we would have had to do without, or buy ourselves.
If we had not been sharing Dexter's story, we would not have won that money. Dexter would not be as strong as he is today.
Through the local news, Dexter's story was shared and a beautiful man purchased Dexter's walker. Something we'd only hoped to own was suddenly ours.
It's hard to explain how incredible it felt to own a walker and a standing frame.
Dexter was first in his local paper after he was diagnosed with cancer.
The first time you are in the newspaper is fun and exciting.
Now, we do actually contact the newspaper when we want
to publicly thank someone for helping Dexter.
They know Lenice is a bit camera shy, so they don't push her to be in photos.
(Andrew is usually working when interviews are done.)
The Kiama Independent know Dexter well, and support us each time was ask them to publish something. We've also been supported by the Illawarra Mercury
and WIN News. We have approached them once or twice and they have helped us out. The local radio station, i98FM, also promoted Melissa's fundraiser.
This support means a lot to us.
Our only hope is that people do not get bored with always seeing Dexter.
If we could choose between being known by the local media
and having Dexter running around, yelling and chasing birds...
we'd choose the running and yelling one.
But, we have our Dexter... and he has cerebral palsy, and because we are using this website and social media to raise awareness and acceptance of kids with cerebral palsy (and vision impairments and childhood cancer) our story reaches the media.

We've had fundraisers and, in all honesty, we sometimes feel weird about taking money. We wonder whether people are wondering why we should be getting the money... when we already got a lot of money. Sometimes, we worry about sitting in a cafe and having a coffee... wondering whether people will judge us and think
we are using Dexter's fundraising money on fun things for ourselves.
We promise... every cent given to Dexter is spent on Dexter.
Cerebral palsy is expensive... well, not really.
If we were happy to leave Dexter on the floor all day, every day,
with no hope for the future... cerebral palsy would be free.
But, we want the best for Dexter - and wanting him to have the chance to be his best requires a lot of time and effort.... and money.
(For example - Dexter's starting to show interest in feeding himself.... to do so,
he needs good spoons... we got a set for him and they cost about $50.)
So now, when people offer us money for Dexter, we accept it.
We accept it for Dexter and we appreciate it.

Without this webpage and his facebook page, many people would not know about Dexter and they would not be interested in his story. They would not be proud of his efforts and they would not want to help him.

We have met so many wonderful, genuine people through Dexter.
He really is an amazing little boy, with the longest, thickest eyelashes
and more determination and cheekiness than we could ever have imagined.
To everyone who has followed his story...
Thank you
Thank you for seeing Dexter for who he is...
A happy, cheeky little kid.

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Read about
Read how we're teaching Dexter to see
Who is Dexter?
Read our fun post: Chasing the Media
Dexter's operation - set for January 2014

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Thanks to the Clarkes

12/19/2013

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Remember the Clarke family, and their milk crate themed Christmas lights?
Remember they had a tin out for me....
and they were letting people buy flavoured milk for a donation...
Well, look what they shared:

Our family would like to give a massive thank to all the extremely generous people who have filled Love Dexter's donation can ($675.75 counted and banked).
The lights will be on every night and the donation can, flavoured milks, dare ice coffee and juices will be back out every night from Sunday.

Can you believe it?
And actually, they have reached $700 now!
This is one of those times when 'thanks' doesn't seem to be enough.
If you are near Berry, drop by and check out their display in Clarence St.

Thank you!

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