365 days later

I knew I had to pen a blog to mark the day of diagnosis.

I thought about sharing the emotional and physical trauma of the last year; the physical screams caused by pain, the emotional tears of desperation or the withdrawal caused by  despair experienced not only by my son but by everyone who loves him.  I considered documenting the number of surgeries, anaesthetics, lumbar punctures, blood draws, IV chemo, oral chemo, steroids, the sickness, overnight stays, dressings on, dressings off, the leg pain, the steroid rage, the excruciating mouth ulcers, the hair loss, the absence from school, the alienation from reality but that what would that achieve?

Instead this blog, to mark the year anniversary since Felix was diagnosed with Acute Lymphoblastic Leukaemia, is written to give hope.  Hope to everyone affected by any form of childhood illness.  To see a child suffering and being unable to take away their pain, discomfort or distress is the most difficult thing in the world.  However, the strength that you find is phenomenal.

I can remember, quite early on after Felix was diagnosed wandering around Tescos.  Felix had been admitted with an infection.  He was bloated because of the steroids, looked so poorly because of the infection and was tired, tired of it all.  I was so worried, scared really.  I walked up and down the aisles in a trance.  I was using all of the emotional and physical reserves I had.  That day I wondered if there was a limit to how much stress, anxiety and fear my body could take.  I really didn’t think my body could physically cope with much more.

But it did.  That inner strength came from somewhere and we made it through that particularly tough time.  This is what I wanted to share to mark the day of diagnosis.  We can do it, you can do it.  You have to and from somewhere surges an undefeatable strength and determination.

  • Your child will display more resilience, character and positivity than you knew they had.  You will be so proud of them.  They will astonish you every step of the way.
  • Their brother or sister will cope.  They will still love, fight and laugh.  They will find things hard at times but they will become even more united through the battle.
  • Friends and family will be there to help support your towers of strength when they buckle.  Some friends and family won’t know what do and may well fall by the wayside during this time.  That’s normal.  Let them go.  Concentrate on your towers.
  • There will be people out there who do understand how you feel and will be there for you.  They will make you feel humbled, loved and often reduce you to tears because of their kindness. These are your scaffolding, don’t take this down too early, in fact try not to take it down at all.
  • You can do this thing.  You might feel like you don’t have the strength, that you are scared beyond words and that you are petrified of the future.  Look at time in segments.  When you get through that five minutes, that hour, recognise it and then look towards your next period of time.  Your love, passion and determination will get you through this.

Today is just a day I know but I’m glad it’s here.  I woke up this morning, opened my eyes and realised that yes, it’s just another day.  We are different people compared to the ones we were a year ago.  We have been honoured to meet some amazing people and children on the way.  We have experienced the extremities of emotions in the last year; huge highs and desperate lows.  But throughout it all we continue to be grateful and hopeful.  We are more content, we are more at ease, we are stronger in so many ways.

We have 820 days to go.  Let’s do today, and the next day and the next day.  Let’s do it with love, passion and determination!

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9 thoughts on “365 days later

  1. This is so true and what you described of walking around tesco sounds all familiar.
    My daughter was diagnosed in 2012 with ALL and now in 2nd year doing ALevels. Megan shocked us by doing her GCSE still as planned either in hospital or at home as not well enough to be in school.Felix looks so well while in maintenance,you all do as i try following the post and i know its not what goes on behind closed doors.
    But a count down is good something to aime for everyday ,im guessing sometimes seems still al9ng way off as the boys treatment is longer but your all doing well xx sending lots of love xx

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    1. So pleased to hear that your daughter is doing so well, particularly in terms of her education. I do worry about the effects of the chemo on his learning and progress but trying to put that on a back burner at the moment. He’s got his SATs coming up in May and he’s so enthusiastic about preparing for them. He’s really motivated which for me is all I want. Thank you for your kind words – whenever I see someone ‘lost’ in a supermarket I always wonder where they are. Hope you have a lovely weekend xxx

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  2. This all really stuck a cord with me, as my own boy (Theo, age 8) also has ALL. Diagnosis came on the 6th November 2016, so all this is relatively new to us. Thank you for posting, & love & best wishes to all children & parents affected. We can do this!
    Claire x

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  3. What a truly accurate description of how a cancer diagnosis affects the whole family. My beautiful boy was diagnosed with ALL aged 4 in February 2009. After a long and very bumpy road, he finished his treatment in April 2012. Today, aged 12 he continues to amaze us with the gut and determination he shows in everything he does. He is a wonderfully brave, contented and extremely happy boy and we are so proud of him. Sending you and your lovely family all the love and luck in the world xx

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    1. I so love reading accounts like this. He sounds like a wonderful young lad – we are so lucky to have these beautiful kids aren’t we! Thank you for taking the time to comment and sharing your positive story. Sending you lots of love. Kerry x

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