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.

This means that today, he has been fighting cancer for half his life. Tomorrow, more than half his little life will have been spent on this journey, on this battle. It will be 10 months after his treatment finishes, when he will be over 6 years old, before the balance swings back.

At the moment cancer feels like a mountain in Hugo's life, in all our lives. Huge and all consuming, filling our every moment with its sheer size. A constant and unwelcome presence. But I know, I have to believe, it won't always be this way. That there will come a time when cancer will no longer be a mountain, but instead a mere dot. One day we will be able to look back, when the balance has well and truly shifted, and see cancer as a small dot on our otherwise rich and wonderful lives.

I do not want this experience to define Hugo, he is so much more than his illness and he will go on to be even more, but we will never be able to forget, the dot will always be there, however small. My hope is that it helps to shape him, that there are positives to be taken from this otherwise horrible experience. That it is teaching him empathy and compassion. I hope it is showing him how strong and resilient he is. That different is good and you can fight a great battle with love in your heart and a smile on your face.

I look forward to a time when he has conquered the mountain, when he will be able to look back and see how far he has come. I hope he won't feel sadness or anger at the difficulties he faced, but pride at how much he was able to overcome. That he will be able to draw strength and courage from his experience to help him face the inevitable obstacles and difficulties of life.

I hope as parents we have taught him what we have learnt, to see joy in the ordinary, to find light in the darkness and to not take anything for granted. I hope he feels the love and support that constantly surrounds him and that it continues to bring him comfort and strength.

I wish for so much for Hugo. A life full of love, happiness and adventure. A chance at normality, of the ordinary as well as the spectacular. I hope this experience will not dull his spark. That his kind, caring and beautifully sweet natured personality continues to grow and flourish, that his smile and cheeky sense of humour is not tainted or diminished by the length and toughness of this journey. But mostly I wish for him a life unencumbered by the fear and worry that cancer brings. A life free from the constant presence of a mountain that he didn't ask for and most certainly didn't deserve.

I don't want to wish the time away, these are tough months and years, but there is joy too. We may be facing a mountain, but there are opportunities to stop, to take a breath and appreciate the view. We can be thankful that we are in a position to climb and to have been given hope that one day we will reach the summit. So for now, we will keep putting one foot in front of the other, we will keep climbing. We will have faith that there will come a day when the balance has shifted and the mountain is a distant memory. 

Because, one day cancer, one day you will be a dot.

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.