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.

I have learnt medical terms, how to pronounce the names of medications that previously seemed like a foreign language.  I can hold my own in a conversation full of acronyms and medical jargon.  I know how to silence a beeping IV drip machine in the middle of the night and administer toxic medications to my child.

I have discovered that during tough times many friendships and relationships grow and strengthen, while a few wilt, never to be the same again.  That love and support can come from unexpected places and even the smallest thoughtful gesture really can make a difference.  I have seen that people can be so very kind and that there is a wonderful army of support behind us, willing us on.

I have imagined my child's funeral.  I have thought about what would be said and who would be there.  Songs on the radio about love and heartbreak have taken on a new meaning as I imagine them playing at his funeral.  I have questioned whether I would be able to go on without him.  I have learnt that I am not alone in having these thoughts.  That despite the guilt I feel when these thoughts come into my head uninvited, they are normal.  Heartbreaking, but normal.

I have learnt how strong and resilient children are.  That my own children can amaze me every single day with their courage and their ability to keep smiling through whatever is thrown at them.  While at times it seems so unfair and we are filled with anger and fear, we have grown stronger as a family.  My heart is full of sadness and pride in equal measure.

I have realised that you never know what battles other people are fighting.  What goes on behind closed doors, what news they have just received or what heartbreaking situations they are facing.  We all have our own battles and we all learn to put on a brave face and put one foot in front of the other to get through the day.   I hope I have learnt to be kinder and more compassionate.

I have discovered that 11 children are diagnosed with cancer every single day and that 3 of those children will not survive.  That there is a whole world of childhood cancer that is underfunded with little awareness.  I have met children who despite their bravery, their courage and their beautiful smiles, have had their lives cut short by this awful disease.  This knowledge has driven me and I have discovered a passion in raising awareness and funds in an effort to make a difference.

I have learnt that the worry of 'what if', of not knowing what is around the next corner, can be completely draining.  That this journey, at just over 3 years, is definitely a marathon and not a sprint.  There are many twists and turns and it is impossible to predict what is coming next.  Every child's experience will be different and no one has an easy ride.  That it can be lonely and sometimes just getting through the day or holding a conversation can be exhausting.

I have realised that there is more to cancer treatment than hair loss and IV chemo.  For Hugo it has been muscle weakness, loss of appetite, disrupted sleep, night sweats and mood swings to name just a few.  It has meant a wheelchair and oral chemo every single day.  It has been about expecting the unexpected and facing fresh challenges as they arise.

I now know that even through the most difficult of times and the most challenging of situations there can be light.  That there can still be reasons to smile and that there is joy to be found in the ordinary.  This experience has changed the lives of my family forever and I know that when this journey is over, it will never really be over.  Along with the darkness, this experience has shown us how much we have to be thankful for, that we should never take anything for granted and how truly precious and beautiful life is.

I have learnt that whatever is coming next, we will keep growing stronger, we will keep fighting and  we will try to keep smiling.  I'm pretty sure we still have a lot more learning to do.

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.