Back from my Blogging Holiday!

It’s been so long since my last blog and this has been a conscious decision following Childhood Cancer Awareness Month.  The response to my #ablogaday was phenomenal and thank you to everyone who contributed and all who engaged with it.  What I was not prepared for was the emotional toll that came with it.

Throughout September I was inundated with blogs from friends, family and virtual friends who all wrote enlightening and inspiring pieces straight from the heart.  Of course, I had to read and edit blogs where necessary, I hadn’t thought this bit through.  At the beginning, it was fine but as the days went on, the rawness and honesty in these blogs started to weigh me down.  It was the hurt and the pain that so many people carry round with them that hit my heart.  On 25th September #ablogday stopped.  In all honesty I think a was waiting for Mr Brown to contribute, and once he had my pursuit was over.  I needed a holiday so I packed up my Blog and spent some time away.

I’m back with a new haircut and everything!  I’m back and really looking forward to writing again.  I’m back recharged and emotionally back on form.  One thing that makes me so proud of Mrs Brown’s Blogs is the positive engagement that takes place and the supportive platform it offers others.  This is want I now want to build on.  Whilst Childhood Cancer is still part of our lives and always will be, I want to move away from it being the main emphasis of my writing.  I now want to explore the myriad of parenting and family experiences that we all enjoy/despair of each day.  There will of course be the added dimension that my son is in treatment for leukaemia but all families have their unique dimension.  And that is what is so wonderful about us all.  We can all celebrate our achievements, worries and concerns – none are more significant than others, it’s all about perspective.

I’m so pleased to be back and look forward to sharing my thoughts and feelings about the crazy and often confusing world around us.  I have plans to explore behaviour as communication, our daily routines and how we goal set for ourselves and our family.  I want to start to combine my emotional journey with my experience as an educator to explore the everyday nuances of life.

I hope you’ll continue to join me on this journey.  I feel truly blessed to have the opportunity to be excited again – Let’s chat about and enjoy those small things!

 

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Majorca October 2017 – A Blogger’s Holiday

 

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Life’s Firsts

When we’re born it’s all about our firsts.  Our first poop, our first smile, our first sleep through the night.  Then we celebrate the first step, the first word, the first day at school.  It’s all about firsts.

As we get older those firsts dwindle but they are still as important.  The first date, the first job, the first baby.  They are still there but less often.  That is until some form of trauma or loss occurs.

I now find myself relishing firsts in the same way as I did when the children were first-born.  Since Felix’s diagnosis, firsts have become all-encompassing; the first haircut, the first birthday, the first Christmas.  We are currently increasing clinic visits to three weeks for the first time, Felix got winded for the first time yesterday, we are soon to go on our first holiday abroad since Felix was diagnosed.

When we are growing, these firsts are exciting and exhilarating.  This time around I approach these firsts with caution and trepidation.  I can remember last year as the first Christmas loomed upon us – I was pleased and relieved to see it come and go.  The seconds are easier, this is now the #newnormal.

This occupation we have with firsts are apparent not only following trauma but also through loss.  Any first moment, experience or occasion without a loved one is significant and tough.  My heart goes out to all of those experiencing firsts through loss.

We all have and do live through these firsts.  When we are younger, firsts tended to be emblazoned with happiness and delight.  As we get older our firsts become shrouded in hope and resilience.  It is this hope and resilience that is #beinghuman.  In the most emotionally charged moments, we survive.  We survive because we are driven by our inner soul and our we are motivated by our mindset. We know that we have to live through these firsts before they become a last.

As our first foreign holiday approaches, I am drawing on everything that is #beinghuman so that I enjoy and relish how lucky we are to have this first.  I have to bury my worries and caution and replace my feelings with the happiness and delight that I remember from those wonder years.

I really can’t wait for the second though!

#beinghuman #doit #blogit

Life's firsts

 

 

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.

 

 

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