Hugo’s Story

September is Coming

September is coming. Soon the children will be heading back to school and autumn will be arriving. It also means the start of Childhood Cancer Awareness Month, the colour for which is gold.
Since Hugo was diagnosed with leukaemia a little over a year ago we have been thrown into the world of childhood cancer. We have talked about it with doctors, we have read about it, we have watched our son undergo treatment for it and endure the side effects. I am a strong believer that knowledge is power, so I have tried to absorb all the information I can in an effort to understand and support him as much as possible. I suppose it’s my way of trying to retain some control of the situation.
Over the last 12 months we have raised over £9,000 for some of the amazing charities who have supported us and other families like ours. I have become a patient ambassador for Bloodwise to help them in their mission to beat blood cancer sooner. I have tweeted, urged people to donate blood and join the stem cell register. We have appeared in an awareness video and been photographed. I have joined Facebook groups and worked with other parents, sending dozens of emails in an attempt to encourage buildings and landmarks to ‘Glow Gold’ in September, and of course I write this blog.
I hope I do all of this in an unobtrusive, non-pushy way. I am very aware that this world we find ourselves in is our world. It is our fight, our journey and other people have their own battles. Whether those battles be big or small, they are battles none the less. My aim is to be informative, to offer support, to help raise awareness where I can and to keep people updated on Hugo’s progress.
That being said, there are moments when I want to scream and shout. Times when unobtrusive and non-pushy just don’t seem enough. Days when I am sad, angry and frustrated.
Cancer is the most common cause of death in children aged between 1-14 years. Every day around 11 young people in the UK are diagnosed with cancer. 11 children. Every. Single. Day.
Those 11 children will be treated with drugs, that in most cases, are decades old. Of those 11 children, 3 will lose their lives. 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.

Why is it then that childhood cancer is so severely underfunded? How can it be that of the £404 million research budget raised by a leading cancer charity, only 1.33% was donated to childhood cancer research? How is it right that only 3 new drugs have been developed for use in childhood cancer in the last 21 years, compared to around 80 in the last 5 years alone for adult cancers?
These are our children, our future, our next generation, why does it seem like we are failing them so badly? They are the members of our society who need our support the most, who need us to be their voice, why aren’t we all screaming and shouting on their behalf?

Before my son was diagnosed with cancer I didn’t know any of this. I had no idea that September was Childhood Cancer Awareness Month. Now I am part of a club that no parent wants to belong to. A world where interspersed with pictures of cute kittens and people’s holiday snaps, there are updates in my newsfeed from parents who have been told that nothing more can be done for their child. A world where children are struggling everyday to survive the very treatments that are meant to save them.  Sometimes it’s too hard. I want to look away, to not see the photos of the beautiful, brave children who are no longer with us. But I can’t, because they deserve more. I didn’t know before, but I do now. How can I look away?
Our children need our help. We need a cure, but we also need kinder treatments, an increase in funding and further research. People need to know the signs and symptoms because early diagnosis can save lives. We can’t make a difference to those who are currently battling or those who have already been lost, but we can try and change things for the children who have yet to enter the world of childhood cancer. The first step to all of this is awareness. September is Childhood Cancer Awareness Month. The colour is gold. If you didn’t know before, you do now. Please help spread the word.  

*wear a gold ribbon pin or wristband – http://www.cclg.org.uk/shop/Childhood-Cancer-Awareness-Month
*add a twibbon to your Facebook or Twitter profile photo – www.twibbon.com/support/glow-gold-september
*take a gold themed photo of yourself and share it on Facebook or Twitter #GlowGold #ChildhoodCancerAwarenessMonth or #CCAM.  Share on our Twitter and Facebook page too! #TeamHugoGoGold

*Follow the Glow Gold and Make September Gold for Childhood Cancer Facebook pages and share, share, share
www.facebook.com/GlowGoldSeptember
www.facebook.com/KidsForeverGold

*Light up or decorate your place of work or your home in gold.
*Donate to Team Hugo’s Go Gold fundraising page which is raising money for The Children’s Cancer and Leukaemia Group www.virginmoneygiving.com/TeamHugoGoGold