Two Years a Blogger ~ How Blogging Has Helped Me Cope With My Son’s Cancer Diagnosis

Two years ago today I sat and wrote my first blog, ‘And so the story looks like this’.  I can remember it well.  It symbolised the start of my re-engagement with the world following Felix’s diagnosis of Acute Lymphoblastic Leukaemia.  Whilst this was just a virtual dialogue, the safety of the blogging world gave me control over who I engaged with.

At the time, I was reluctant to be with or speak to people outside of our home because of the unpredictability of who I might see, what might be expected in conversation and how I might respond.  We were submerged in a new world of emotions where my only priority was to keep Felix emotionally and physically strong along with his brother and sister.  I did not have the capacity to think or consider beyond this.  In all honesty, I feel as though I am only just beyond that remit now.

When the children went to bed I would sit in the front room with the TV on for background noise.  My husband went into the other room and lost himself in a different virtual reality of gaming.  This again offered him the emotional security and safety we relished.  We didn’t really have the emotional strength, need or want to talk to anyone, even over the phone.  Our world was so small and confined we had very little to talk about beyond treatment plans and the logistics of family life with a very poorly son.  So I blogged.  My first blog just came out.  No planning, no theme just what I wanted to expel and vocalise. Once I started I couldn’t stop.  I blogged every evening as a way of trying to make sense of what was going on our lives.  I blogged to numb my feelings of utter terror.  I blogged so that something good might come out of this thing we were in.

As I blogged my heart out, my readership grew.  The comments and support I received gave me purpose and a desire to use my blog as a forum to spread awareness of what families in difficult situations including childhood cancer go through and offer support if I could.  People starting contacting me from near and far about all sorts of things.  I was speaking an honest and brutal language which many people understood and had experience of themselves.  This positive response empowered me to continue writing with the hope that each blog would resonate with just one person so that he/she will no longer feel alone or confined to the situation they are in.

I never intended Mrs Brown’s Blogs to be a commercial blog, I still don’t (although if it could pay off our mortgage, that would be quite nice!).  Yet, at the end of the week, I am attending the UK Blog Awards 2018 as a finalist in the Health and Social Care category.  I am so proud to have achieved this; I am so proud that childhood cancer will feature on a mainstream platform.  We must talk about this.  It’s not going away and the stats of 1 in 300 is not rare – 1 in a million maybe.  The more we talk, the more people will listen and the more potential there is for change.

In the meantime, I would like to take this opportunity to thank you all for your love and support over the last two years.  It has really made this whole thing easier to bear.  This is just the beginning, I still need you!  We have just over a year of treatment left, please stick with us and encourage others to join the journey.  The tough and difficult times that we go through are hidden within my words, yet by communicating them to you, the intensity reduces enabling me to do what I have to do.  That is, work towards a positive future for all of #TeamBrown and other families who have to walk a similar path.

 

 

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April 2016

 

 

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Childhood cancer – the “virtual” friend perspective. Guest Blog by Christa Harrison

We’d “known” each other for years.  Met on a parenting website.  Matching aged girls,  similar religious beliefs,  and just generally got along.  It continued as things like Facebook happened,  seeing snippets of each other’s lives,  comments,  not really big meaningful talks but a friend all the same.

Then Aillidh had a bruise.  Something was off about the statuses,  something was clearly worrying them more than a child with a bruise.  The message came filtered through the friendship tree. “Aillidh has cancer.”

I got home and held my baby girl close.  I looked at her and could not even begin to comprehend what my friend was feeling.  My words seemed so empty.  I normally have too many words,  but this time,  there were none.

I was also caught up in my own life.  Adam was “just” ill, then it was cancer (“good cancer” as he always called it – there was a cure without chemo).  I felt my world rocked with his diagnosis and again had no clue how to even consider understanding her world.  How magnified was that pain when it is your baby?

But it would be ok, right?  In the end.  They would go through hell but they do bone marrow transplants and chemo and things for leukemia?  Acute Myeloid Leukemia though, as I was soon to realise, wasn’t like the others.  Added in that she was mixed race,  there was then the push for finding a stem cell bone marrow donor who could fill that narrow percentage match.

The internet did its thing.  We pushed for people to register with Antony Nolan,  we raised money for her unit,  for somewhere close for her parents to stay,  for anything they could need.  Woolly Hugs got to work crocheting squares across the country so that Aillidh,  this innocent 8 year old girl,  could be hugged by all the “strangers” who cared.  We played Call Me Maybe, her favourite song of the time,  and we hoped.

I celebrated my daughter’s ninth birthday with friends and family. Aillidh celebrated hers with tubes and nurses.

Finally,  finally,  there was a match.  She was so weak,  so small,  but there was a match.  It would be over!

Then came the infections,  her tiny body needed to be able to heal them at the same time.  We clung to hope,  this collection of virtual friends and I.  We prayed to any god that we thought might listen.

I was at a party when I got the call.  I remember my world going silent and me sliding to the ground.  I didn’t know that my heart could break for a child I’d never held,  and a friend I had never met.

It always feels very selfish,  like it is claiming another’s grief,  like when celebrities die.  But my heart aches for Leigh every day.  I post statuses about my daughter and think “she should be having this.” I came across a comment recently on an old status where we were discussing what they would be like as teenagers and I’m angry that that was taken from them.  I hear Call Me Maybe and sing loudly, with tears streaming.

Then, last year, my son came home from school…  “Felix has cancer.” I held him so tightly.  My mind spun.  Not again.  I didn’t know you,  but my heart reached out to you.

Every year I run, climb, crawl to raise money,  every year there are new names,  but it is always, always, Aillidh at the heart.

Feeling Helpless ~ A Guest Blog By Wayne

Hi, I’m Wayne. A proud, loyal and lifetime friend of Team Brown. Some of you know me, some of you don’t, some of you think you know me and some of you have never even heard of me. If you are reading this then I don’t need to explain the story of Team Brown, their heartache, their bravery, their determination (I think they call that Mindset these days), their inspiration and their lust for life.

As we are aware Mrs Brown (or Lady K as I know her) has made a fascinating, award nominated, probably won blog of life so far. Due to the popularity of this she asked me to write a blog post for her, like a guest post, (obviously the numbers are getting too high), how could I refuse, so I said yes and here it is.

Feeling Helpless.  That’s how I felt when Dylan broke the news to me about Felix.  It was horrible, a feeling that I never want to go through again. It was late one evening when Dylan text to ask if he could call me in the morning, a strange request, and I knew something was wrong.  I’ve known Dylan since school days, we’ve never scheduled a call before. I said ring me now if you need to talk, looking back on that night, I realise he probably needed to gain his composure.  Of course, I said all the normal things on hearing this horrific news, ‘Is Felix ok? Are you ok? Is Kerry ok? Are Talia and Rufus ok? What can I do?  What next? Will he be alright?’

All natural questions, of course, none of them were ok, of course, they didn’t know he would be ok! There is nothing I could do, or say that would make this situation go away, I felt useless.

As time has gone on it would seem Felix is doing ok, it would seem he wasn’t ill, it would seem this whole thing hasn’t happened. But it has, and well done to the medical team, and well done to Team Brown for making a nightmare seem like the New Normal. The strength, courage and bravery that this family has shown are beyond words. New normal?  They are busier now than when I’ve ever known them, for that, I salute you, Team Brown.  INSPIRATIONAL!!!!!! Because of Team

Because of Team Brown’s lust for life, the Childhood Cancer Awareness Campaign and a ‘can do’ attitude, it has spurred me to put myself out of my comfort zone and raise money for Cancer Research.  Felix will finish his treatment 26/04/19 and around this time I plan to row around the Isle of Wight (59 miles).  Giving a perfectly healthy Felix a cheque to hand over to Cancer Research will make me feel like I’ve done something to help. More to follow on the challenge……..

More to follow on the challenge……..

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Childhood Cancer: the child, the smile, the hurt.

On this, the first day of Childhood Cancer Awareness Month, I write this thinking of all of the wonderful children I have met and yet to meet, who have endured toxic and barbaric treatment for cancer.  Those children who have experienced physical, emotional and social trauma beyond our imagination.  Those children who are still in treatment, those in remission and those children who endured so much but went too soon.

This is written for you and your smile.  The smile that hides minutes, hours and months of suffering.  The suffering that we could not stop or save you from.  I remember that smile in the early days which silently asked us what was going on. We couldn’t answer, we didn’t really understand.  That smile that disappeared for weeks as steroids and intense chemotherapy engulfed your young body.  The smile that returned, hesitantly, knowing that a future was a long way off, unsure of what was going to happen next.  That smile that took all the energy to muster when you were terrified.  The smile that turned into a scream when you were admitted to hospital because of an infection; you knew what was ahead, you knew you would be separated from your family, again.

At your tender age, you know that your smile makes others feel better.  I want to thank you for your smile.  Your smile is a symbol of your courage and strength.  People could learn so much from you, from what you’ve been through and continue to face on a daily basis.

Research into new and kinder treatments for Childhood Cancer is underfunded world-wide.  The argument is that it is rare and therefore does not warrant equal funding that adult cancer receives.  Childhood Cancer is not rare – that smile lives next door, in your child’s class, in your child’s football team.

I will do all I can to raise awareness of the story behind that smile.  During the month of September I intend to write #ablogaday.  I have no schedule, no titles only ideas.  These blogs will reflect the thoughts, feelings and impact of our experience of Childhood Cancer on Felix, our family and our community.

Please help us raise awareness by relentlessly liking, sharing and retweeting.  If we get on people’s nerves, that’s great – we’re having an impact!

Thank you already – let’s shout as loud as we can.

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Felix Brown age 11