THE BLOG

What Would Hugo Say?

19/09/2017 13:06 BST | Updated 19/09/2017 13:06 BST

A few weeks ago the charity Bloodwise asked if Hugo and I would be the face of their Blood Cancer Awareness Month campaign in September. 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?

Since his leukaemia diagnosis I have shared Hugo's story openly and honestly. There are photos of him on social media for all to see. I have blogged about the personal aspects of our story, the good, the bad and the ugly. He has been in the newspaper, in charity magazines and videos. I have done all of this with the best of intentions. I wanted to let people know how Hugo was doing, to raise awareness of childhood cancer, to fundraise and to support others in the same situation, to let them know they are not alone. I also wanted Hugo to see, one day in the future, just what he went through, what our lives were like and how amazing he was.

Hugo was two years old at diagnosis, he is four now. He has very little understanding of what having leukaemia really means, it's just his life. He doesn't fully realise that he is any different from his friends. In so many ways this is a good thing. It protects him from many harsh realities, from the stress and the worry of his situation.

However, it won't always be like this. One day he will understand, he will have questions. Will he understand my actions? Will be be proud of what he went through, how brave he was and what he helped to achieve? Or will he be embarrassed at having so much of his life shared, or worse still, angry? Maybe he will want to help in my efforts to raise awareness and funds, or perhaps he will rather forget all about it and prefer not to talk about it.

Like so many other aspects of this experience, I just don't know. Yet again, I don't have the answers. I hope he will understand, that he will find it interesting even. That it will offer him an insight into a life that he may barely be able to remember. I hope he will appreciate the positives we tried to find, the difference we tried to make for children like him, because of him. I wish I could ask him. For now I will just have to trust in what we are doing, that we are doing it for the right reasons. That the bigger picture of helping others is worth the risk.

So after some deliberation, we gratefully accepted the opportunity. This month Hugo's little face has been popping up all over the place. We have featured in a video and had photographs taken which have been used in magazine inserts, social media, tube posters, mailings and on Bloodwise's website

The beautiful and powerful video was shown at the launch of a Bloodwise's report, The Quest for a Kinder Cure, where leading clinicians and researchers in the world of children's cancer discussed the need for kinder treatments.

The lovely staff at Bloodwise have been thanking us profusely for our part in the campaign. I'm not sure they realise how much it has given us. I am proud of my role as one of their patient/carer ambassadors and I am grateful that they have given us an opportunity to raise awareness, to have a positive focus in this otherwise helpless situation. The knowledge that we are helping children like Hugo who will be diagnosed in the future is thanks enough. We are giving something back. Hugo is helping to make a difference. I hope he understands. I hope he is proud. I know I am.

To read more on Hugo and his experience with acute lymphoblastic leukaemia, please visit www.lifeloveandleukaemia.blogspot.co.uk.