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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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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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