A Balancing Act

12/09/2017 17:48 BST | Updated 12/09/2017 17:48 BST
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In the UK, 11 children a day are diagnosed with cancer. In July 2015 one of those 11 was my youngest son, Hugo. What started as a refusal to bear weight on one of his legs resulted, five weeks later, in a diagnosis of acute lymphoblastic leukaemia. He was two years old.

He is now four and has just over a year of treatment left. To say his diagnosis turned our lives upside down and to say we were devastated sounds like a cliche, but it's true. The last two years have been a steep learning curve in everything childhood cancer.

This week Hugo started school. A huge milestone in any child's life, but one that seemed even more significant for Hugo. During my darkest times I wondered if we would see this day. In his short life he's already had to fight so hard, show such courage and endure more than most people will in their entire lifetime. He deserved this day, this piece of normality, this childhood rite of passage.

I pushed Hugo to school in his wheelchair. The treatment that is saving his life is also doing considerable damage to his little body. The muscle weakness in his hips, legs and feet mean that he is currently unable to walk. This is not how I had imagined this day, in years gone by.

I am overwhelmingly grateful that he is still here, that he has achieved this milestone and that he has a chance of a future. The knowledge I have gained over the last two years has shown me that not all children are as fortunate. That some parents dread the month of September and the barrage of back to school photos as they contemplate what might have been, of what should have been.

But at the same time I am sad, I am frustrated and I am angry. This isn't how it should be. Cancer is stealing so much from him, so much of his childhood is being lost to drug side effects, to hospital appointments and illness. The impact of his diagnosis affects, not just Hugo, but the whole family and all those who love us. A cloud of worry and fear surround us as we try desperately to adjust to the twists and turns of this new normal life. This life we didn't ask for and were completely unprepared for.

It's an emotional battle, balancing the gratefulness I feel that he is here, with the frustration at finding ourselves in this awful situation. Cancer has shown us how strong we are and Hugo is fighting it with love in his heart and a smile on his face, I couldn't be prouder of him and our little family. We have learnt to find the joy in the ordinary and we no longer take anything for granted. We have worked hard to find positives in our situation, but that doesn't stop the frustration and anger. Hugo is having to endure so much, we all are, and I know that when the treatment ends next September, it won't really be over, it may never really be over.

We are indebted to the wonderful charities who have funded research and achieved so much in the last few decades so that leukaemia is no longer the death sentence it used to be. However, there needs to come a time when we can not only cure our children, but do it in a kinder way. A cure shouldn't come with a cost, children shouldn't be living the rest of their lives with long term health implications because of their treatment. They shouldn't be losing their childhood to a hospital ward or their growing independence to a wheelchair. So much has been achieved, there is a great deal to feel appreciative of, but there is so much still to do. It is ok to be grateful, but to still want more. Our children deserve more, so much more.