One Day Cancer, You Will Be a Dot

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Today it has been 2 years, 4 months and 5 days since Hugo was diagnosed with acute lymphoblastic leukaemia.  

The significance of this day?

He was 2 years, 4 months and 5 days old at the time of diagnosis.

A Bumpy Road

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A few months ago I wrote about a bump in the road. Hugo had broken his leg and there were questions over his bone density and muscle weakness. My head was spinning with all the 'what ifs' as we waited for answers.

Hugo has been unable to walk since the break. There has been an inconclusive bone density scan, a painful nerve conduction test, a pause from medication, X-rays and most recently an MRI scan to rule out neurological or spinal issues. He has had physio, hydrotherapy and daily exercises. We have had more frequent visits to Great Ormond Street Hospital as they try to understand what is going on and help him get back on his feet.  It has been over six months since the plaster cast came off. There are still questions, uncertainty and worry and I am still wondering just how big this bump in the road is.

He is Here

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So September has arrived, which means the start of both Childhood Cancer Awareness Month and Blood Cancer Awareness Month. A month where I try to raise awareness, to fundraise and share an insight into the world of childhood cancer. A month that has become incredibly important to me since Hugo was diagnosed with acute lymphoblastic leukaemia just over 2 years ago.

However this year is just a little bit more important, because this September Hugo starts school. 

What Would Hugo Say?

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A few weeks ago the charity Bloodwise asked if Hugo and I would be the face of their Blood Cancer Awareness Month campaign. My first thought was to immediately say yes. To be able to share our story and raise awareness for a subject that has become so close to our hearts seemed like an amazing opportunity. But it also brought to mind a question that I have been pondering for a while now. What would Hugo say?

Things I Have Learnt

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It has now been 2 years since Hugo was diagnosed with acute lymphoblastic leukaemia.  24 months of our strange, new, cancer filled life.  The learning curve has been steep and I'm pretty sure it's not done yet.  Here are a few of the things I have learnt.

Today I cried

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Today I cried.  Not a huge great sob fest, just a little tear, catching me unaware.  I cry fairly easily.  Sad books or films on the TV, even adverts have been known to set me off.  However I don't often cry  because of Hugo's illness.  I think the fight in me stops me, it just feels pointless, a waste of my time and of no use to Hugo.  But today I did, just a little.

Watching and Waiting

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When Hugo started the maintenance phase of treatment 14 months ago, we were warned that there would be hospital admissions.  That Hugo's low immunity would make him susceptible to infections and that his inability to fight these infections would likely mean IV antibiotics administered in hospital.  It wasn't a case of if, but of when.

Today I am Stopping

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Once in a while, on rare occasions, things go just how you would like them to.  All the pieces of the jigsaw fit together.  An imagined ideal that seemed so out of reach becomes a reality.  

All too often these precious moments pass us by in a blur.  Lost in the hustle and bustle of everyday life.  Drowned out by more challenging or stressful issues.  Life rushes by and the chance to stop, take it in and feel thankful passes us by.

Well not this time.  Today I am stopping.  I am taking it in.  I am feeling thankful.

Bumps in the Road

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We are plodding along.

What seemed so strange and scary at the beginning has somehow become normal.  There is a new standard to measure by and everything is fine, by this new standard, good even.  Until it isn't.  Until there is a bump in the road.

Halfway

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We have now passed the halfway point of treatment.  Hugo is currently on month 20, with 18 more to go.  We are on the downhill slope towards the end of treatment.  That light at the end of the tunnel is getting ever so slightly brighter.