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. 

It would be a big day, even without the leukaemia. He is my last child, my baby. A sometimes quiet and sensitive child, he doesn't always adapt well to change or new people. He doesn't have the easy confidence of his big brother, always wanting me close for reassurance. I'm nervous for him and how he will cope, whether his current excitement will last beyond the school gate. Having both my children in school signifies a new phase in our lives which is both daunting and exciting. They are growing in independence and exploring a world away from me. I am excited to see Hugo take on this new stage in his life, but a little sad at the same time, at all we are leaving behind.

Then there's everything else. Everything cancer. The susceptibility to infections, the medications and the time off for blood tests, physio and hospital appointments. The lack of mobility, the low appetite and the tiredness that might make his day hard. There is the wheelchair, a hard to miss visual that sets him apart from his peers. This is not how I imagined it. Cancer was not part of the plan.

But he is here. He gets to start school. I will be taking that all important first day at school photo and waving him off with tears in my eyes. He is here and there are so many children who are not. Parents for whom this day will be unbearably hard as they think of what might have be, what should have been.

With this in mind, it seems even more important than ever to shout from the rooftops that it is September. We have even more motivation this year to want to make a difference.


So we will Glow Gold for Childhood Cancer Awareness Month. For Hugo, for the 11 children who are diagnosed with cancer every single day and for the 3 children a day that don't make it. Cancer is the most common cause of death in children aged between 1-14 years. Of the ones that survive the cancer and the treatment, around 60% will have to live with life long health issues, the fear of relapse and an increased risk of developing another type of cancer. We will Glow Gold for the children, so in the future it doesn't have to be this way.

I will be proud of my work with the charity Bloodwise. Research they have previously funded is the reason Hugo is still here fighting, that we get to celebrate these milestones. I will look forward to seeing him as the face of their Blood Cancer Awareness Month campaign that seeks not only to cure children with blood cancer, but to find kinder ways of achieving that cure. Bloodwise have achieved so much in recent decades with 9 out of 10 children now surviving Hugo's type of Leukaemia. But there is so much more to do, because that 1 in 10 who doesn't survive is someone's child, someones brother or sister who had their whole life ahead of them, someone who maybe should have been starting school this September too.

We will continue to raise awareness, because awareness is the first step. I will continue to tweet, to share our life on social media in attempt to show the reality of childhood cancer. I will urge people to donate blood and join the stem cell register. I will sell gold ribbon pins and continue to ask my friends, family and local community to Glow Gold. I will hold a bake sale to raise funds that will go towards vital research. I will try to make a difference, however small.

On 6 September I will have a tissue at the ready as I take my brave and beautiful youngest son to school for the first time. I will have faith that this is another challenge he will overcome, that he will yet again surprise me with his courage and ability to smile. Most of all I will be grateful. Because although it is not how I imagined it, he is here. He is here.




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.