Find the Wonderful in Today

Such a simple message but one which often gets overlooked in our busy and hectic lives.  The older we get, the more we seem to miss the wonder and awe in the world around us.  Find the Wonderful in Today is the family motto of the Codling Family – a unique family who now offer a sanctuary within the dunes of Perranporth in memory of their son Charlie.

In March 2012,  Charlie Codling was suddenly diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG), an incurable brain tumour.  Devastatingly after only 5 months, Charlie passed away on 6 September 2012, just 2 weeks before his 5th birthday.  The family was fortunate to be surrounded by many amazing friends and family who not only gave them unwavering support but they also raised a staggering amount of money which helped them forge some wonderful memories with Charlie.

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Charlie Codling

As a fitting memorial to Charlie, they decided to start the charity: Charlie’s Beach Hut Fund.   Charlie’s, is a beach hut style caravan at Perran Sands in Perranporth which aims to provide families of children with life limiting illnesses and families of firefighters that have suffered bereavement, or life changing injury whilst in the line of duty, a relaxing environment so they can forge some forever memories, in a hope that they too can ‘Find the Wonderful in Today’.

We were honoured to be invited to spend some time at Charlie’s just months after Felix was diagnosed.  This was the first date that we put in our diary; this was the first time we looked to the future.  That was April 2016 and we have just returned from a wonderful time away.

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I have never visited a place before that is enriched with such emotion and tranquility.  You could feel the love, warmth and compassion emanating from all aspects of this special hut on the cusp of the sea.  With the sun on our faces and waves close by, we had all the therapy we needed in those five days.  We couldn’t help but be inspired by Charlie’s love for life, strength, humour and caring nature and found strength from spending time in his memory.  The proximity of the sea and the beautiful views allowed us to relax in the beauty of the natural world.  Although we never met Charlie, we will forever remember him, Karen, Steve, Freya and Isla as Charlie’s Hut provided us with such a sense of peace, love and togetherness which we could not have experienced anywhere else.

There are many charities such as Charlie’s Hut which are founded through loss of a loved-one.  These charities provide families a unique opportunity to look to the future and provide a sanctuary to make memories and simply enjoy living.  These charities mean so much to the families they help and support.

We will be forever grateful to Charlie’s Hut for the memories we made there.  It really is one of the most unique and awe-inspiring places you will ever find.

If you have two minutes, please help raise awareness about Charlie’s Beach Hut Charity and help more families Find the Wonderful in Today.  Thank you.

 

 

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The boy in the sea​.

He looked so strong and invincible.

I wanted to reach out to him, to tell him that we had been in the same place but I couldn’t.  I couldn’t because I didn’t know what was wrong with him.  All I knew was that he was bald.  All I knew was that he looked like Felix did a year ago.  He was laughing and battling with the waves with such utter joy it was breathtaking.  Amongst the throng of surfers and body boarders, he looked liberated.

This is the image of childhood cancer which is often hidden.  These children are still kids who, when they get an ounce of opportunity, grab life with two hands and relish every moment.  These children will not be defined by their diagnosis.  They are still part of a family, part of a community and part of a dream.  They still have aspirations and hopes.  They still love life.

I don’t know if Felix noticed the boy.  I’m hoping he did but in the same way he noticed the lady on the board with red hair or the young lad who was struggling to keep hold of his board in the wind.  The boy in the sea to him was just another person.

For me, the boy symbolised so very much.  It reminded me of where we were and how far we had come.  It made me think about all that we had learned and how we had grown.  I was in awe of him and his family who were probably close by, watching carefully as he fought the waves and jumped with joy.  I felt proud to observe these small but important and lasting memories being made.

To the boy in the sea, I salute you.  You are the epitome of strength and determination; Thank you for sharing your joy and exuberance for us all to enjoy.

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Croyde Bay ~ July 2017

 

 

 

 

Despite …

Despite the chemo,

Despite the steroids,

Despite the lumbar punctures.

Despite the sickness,

Despite the trauma,

 

Despite the six months off school.

Despite the isolation,

Despite the blood tests,

Despite my vociferous feelings about SATs.

Despite cancer …

…I couldn’t be prouder.

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What Lies Beneath a Facebook Post

This week, my middle son set off with his big sister for his Induction Day at Secondary School.  As I proudly posted a photograph of the both of them together, which in itself is a rarity, the concept of ‘over-sharing’ crossed my mind.  It caused me to deliberate before posting.  But I still did.

Why?

Because I am unbelievably grateful that he is starting secondary school.  Some children won’t.  Some children do but do not finish.  Some children finish but cannot reminiscence with their friends a few years down the line.

Until Felix’s diagnosis, I took all transitions for granted; Transition to Primary School, Secondary School, Post 16 Options.  It just happened, didn’t it?  Actually, it doesn’t.  I often think of a family grieving the recent death of their teenage daughter; in our community, a young lady’s transition to studying GCSEs has been stopped in its track because of a cancer diagnosis.  There are many families who would love to share a picture of their little one today – but they can’t.

I will overshare.  I am grateful for where we are at.  I want to celebrate every achievement.  I hope you understand.

It’s easy to make a judgment about what we see on social media.  It is not for us to judge.  It is not for us to scorn.  It is for us to celebrate with them.  To enjoy their happiness, to share in their sorrow.

I have read many theories which attempt to explain the psychology behind what and why people post on Facebook.  They have analysed posts about relationships, exercise and so on.  The majority of these theories come up with the obvious and simple explanation that posts never reflect reality.  Of course, they don’t.  Any social media post is censored and merely a snapshot of one moment in time.  We all know that.

What I would like to see is more empathy as to why people post what they do and not criticism.  People post for a reason.  It may be obvious, it may be subtle.  For them it is meaningful.  A simple snapshot shared for all to see.

Therefore, please just enjoy it for what it is.  Don’t analyse, don’t over think just consider, maybe even like or comment and move on.  Humans are complex.  Social media isn’t.  A post isn’t reflective of our inner psyche.  It is a merely a moment in time, explained and shared.

Just enjoy it.  Enjoy a little glimpse into someone else’s life.  I certainly do!

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A Dedication to Bradley Lowery from an Oncology Mum

Dear Bradley,

The world is a lesser place without you.  The world is a lesser place without the children who have gone too soon.

Your smile, your love, your charisma banished from this world forever.  Your future, their future, our future changed forever.

Bradley, thank you for showing the world how brave, heroic and strong children with cancer have to be.  I wish you didn’t have to.  I wish you didn’t have to go.

There are children now receiving barbaric but life-saving treatments for a variety of cancers.  Some work, many don’t.  Some survive, many don’t.  It hurts.  It hurts emotionally and physically.  It hurts the child, the siblings, the parents, the grandparents, the uncles, the aunties, the cousins, the friends, the teachers, the coaches, the community – the hurt is timeless and spaceless.  It is a constant.

Bradley, you are no longer suffering which is the only good thing I can say.  Your bravery and smile will live on forever and remind us of all the children whose lives have been taken too soon.

You will always be part of our story.

RIP Bradley

All our love,

#teambrown

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A call to all teachers – having a child with cancer

A year on and more important than ever. Children are diagnosed with cancer every day. We don’t know whose class that child will be in or the brothers and sisters are. Please read and share.

Mrs Brown's Blogs

Well, this is a whole new world from a different viewpoint.  It’s that time of year when teachers are filing away their information and data for their current classes to make way for the profiles of their new children.  For me, this has always been a cathartic time of year; sentimental about those students who will be moving on and excited about those who I will be teaching.  Teachers everywhere are having meeting after meeting at the moment, transferring valuable information about the new cohort.  There will  be spreadsheets galore of information about cognition and learning, sensory and/or physical needs, social, emotional and mental health and the child’s ability to communicate and interact.  Even if your child is progressing well, without any hitches, they will still be a subject of discussion to ensure that your child gets the best start in the new academic year.

It maybe that you have…

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Age 11 & Living with Leukaemia (ALL) – Day 500

When Felix was diagnosed in January 2016, I could find very little information about what his future might look like.  The doctors said that things would get easier once we hit maintenance but looking at my boy suffering from the side effects of chemotherapy and steroid treatment I found this difficult to believe.  There was one moment, about six months in when I met a mum and son at Oncology Clinic.  He was further ahead of us in treatment which, when she said, I could not believe.  He looked like any other kid.  I looked at Felix, bald and bloated through steroids and couldn’t conceive that he would ever look like or be like any other kid again.

 

This is why I feel compelled to write this piece.  It is for all parents and families who have just started this journey.  I know that all children respond differently but this is one story.  This is where we are now, 500 days in.

  • Felix has turned 11 and is now in Year 6
  • He has attended school full time since September 2016.  His attendance is 87%.
  • Absences have been because of ‘wipe out’ days when he is so tired he needs 1-3 days to recover and we have also been fortunate to take 5 ‘exceptional circumstances’ days
  • He completed his SATs tests
  • He takes part in all aspects of school including trips and has just returned from a four-night Outdoor Education residential
  • He plays football for a local football team and was top goal scorer this season
  • He has a girlfriend (he’ll kill me for this!)
  • He goes on sleepovers
  • As a family, we do everything we used to do: camping trips, days out, family events

 

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This is how ALL impacts our lives:

  • Felix has weekly blood tests.  These either happen at the oncology clinic or at home/school.  This continues to be the case even if we are on holiday and so it is arranged for either a community nurse to come to us or we go to the local hospital.  Felix had his port removed as soon as he started Maintenance and so has finger prick blood tests.
  • There have been a number of occasions when his counts have dropped and he has been neutropenic which has resulted in a chemo hold until they recover.  There has also been one occasion in maintenance when his platelets crashed and he was unable to do any form of activity or sport.  This lasted for about 2 weeks.
  • Felix has to attend Oncology Clinic every other week on a Wednesday which takes him out of school for a couple of hours but we try to do it over lunchtime.  He also has to attend an Oncology review at Southampton once every three months.
  • His entry into puberty is being closely monitored, particularly his testicles.
  • Felix has to take daily chemotherapy tablets which are adjusted according to his weekly blood results.  His current dose is alternate days 100/110% which means 10/11 mercaptopurine tablets every evening, an additional 11 methotrexate tablets on a Thursday morning and Septrin morning and evenings at weekends.  Felix independently takes his medication but does find the fact that he can’t eat an hour before the mercaptopurine frustrating at times.
  • He still has a restricted diet, similar to a pregnancy diet.  His appetite waivers because of the chemotherapy and his tastes have also changed (he no longer likes baked beans or chips!).
  • If Felix becomes ill and has a temperature we have to go straight to our shared care children’s unit to be assessed.  We are not allowed to give him paracetamol.

That said, you would never realise any of the above if you didn’t know him.

Our advice would be: take each minute, hour and day one at a time.  There will be a time again when you can look ahead, plan and enjoy.

To me, this picture epitomises how far he/we have come.  To us, this is what life is like living with leukaemia for an 11-year-old.

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Felix aged 11 diagnosed with Acute Lymphoblastic Leukaemia January 2016