Glow Gold for September- Hugo’s Story

When my lovely friend Jo and her work wife Chloe said they were doing a gold themed jumper for Childhood Cancer Awareness Month I was delighted.
Not just because it would raise awareness and funds for the Children's Cancer and Leukaemia Group, but because our experience of childhood cancer fits so well with their ethos.
An experience with cancer is about more than chemotherapy and the physical effects, it's a mental battle too. Not just for the patient, but the whole family.
It's about love and support from others, learning you are not alone and how much difference a simple act of kindness can make in the darkest of days.
It's realising you don't need to be strong all the time. That it's ok to feel sad, angry and scared. It's ok to not be ok.
And it's about hope. Hope that tomorrow will be brighter than today. Hope of making it through to the other side, that all the pain and suffering will be worth it. Hope of beginning a new chapter full of wonderful possibilities.
In July 2015 Hugo was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer, aged just 2 years and 4 months. This September, after more than 3 years of treatment, he will take his last dose of chemotherapy.
Our story....
Around 11 children in the UK are diagnosed with cancer every day. In July 2015 the unimaginable happened and my youngest son was one of those 11. Hugo was just 2 years and 4 months old when he was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer.

People often ask me how we knew he had leukaemia. I want to say that it was mother’s intuition, that I ‘just knew’ something was wrong. How could I not? How could my son have been so seriously ill without me knowing? But I didn’t. Any suspicions that it was something serious were quickly dismissed as an over-reaction. He was ill, but surely he couldn’t be that ill. It’s never the worst case scenario is it? Except this time it was.

A series of seemingly innocent symptoms, ones that could be explained away by a virus, a number of trips to the doctors, until finally a paediatric referral and blood test. We didn’t make it to the paediatrician, the blood test told them all they needed to know and on 13 July 2015, in a moment that plays over and over in my head, I was told it was likely my son had leukaemia. Within 24 hours that diagnosis had been confirmed and we were on our way to Great Ormond Street Hospital. Within 4 days, while we were still reeling with shock, treatment had started.

Hugo has now spent over 3 years, more than half his life, being treated for his leukaemia. He no longer knows any different and the drugs, hospital visits and weekly blood tests are now just part of his life. He has no understanding of the enormity of the battle he is fighting.

During that time I have had to watch helplessly during the sickness, hair loss, pneumonia and liver failure. The infections, mood swings, tiredness and need for a wheelchair as the muscles in his legs became too weak to hold his little body up. I have held him as he cried, unable to take the pain away or make it better. It seems so unfair that the very drugs that are saving his life are doing him so much harm at the same time. 

We have found ourselves living a strange new life that we were completely unprepared for.  A life full of daily medication for Hugo, of hospital appointments and tests. Of constant fear, unknowns and what ifs. Where there are unexpected twists and turns, heartbreak and sadness. 

Where Hugo’s big brother Henry has come to realise that on many occasions he is the ‘other child’ as the focus so often falls on Hugo. Where there are tough conversations about cancer, chemotherapy and the reality that children can die too.

It is far from the life we had planned, far from the childhoods Hugo and Henry deserved. Even after all this time, it still seems unbelievable that we are here, that my son has cancer. It has taken so much from us and forced Hugo to endure so much. It is unfair and frustrating and it makes me sad and angry in equal measure. But it makes me proud too, because we have coped, we have found a way to get through this experience one day at a time. Taking Hugo’s lead as he marches on regardless of all that is being thrown at him. A lesson to us all on what real courage is.

This strange new life has shown us all we have to be grateful for. That we can find joy in the little things we previously took for granted. The time we spend together, creating happy memories, is all the more cherished, because of what might have been, what still could be. There are sad tears, but there have been happy ones too as we have watched Hugo achieve wonderfully ordinary, childhood milestones, like starting school.

We have been surrounded by love and support as our family and friends reach out to us. It has been heartwarming to see how much goodness there is in the world at a time when it seems to be dealing you the worst it has to offer.

We have learnt that we are stronger than we realised, that as long as we are together, then nothing else really matters. 

September is Childhood Cancer Awareness Month, the colour for which is Gold. This has become such an important month to me as I strive to raise awareness, to make a difference, to find a positive focus in this otherwise difficult situation. This year however it is even more important, because this September Hugo will take his last ever dose of chemotherapy.

We can now start to look forward, to a new, exciting chapter in our lives full of possibilities unhindered by cancer, it’s side effects and restrictions.

I know there will be difficult days ahead, when the fear and worry will be overwhelming. Where the memories of what we have all been through will be impossible to switch off from.

But I hope there is something positive to take from it. This experience has taught us so much and we are starting this new phase of our lives as different people to the ones we were 3 years ago.

We have seen that even in the most difficult times, the most challenging of situations, there can be light. We have experienced first hand how much love, support and the simplest acts of kindness can make a difference. That we never know what invisible battles people may be fighting. I hope we are kinder, stronger and more compassionate people now.

I have seen the amazing resilience of my children and others just like them. Hugo, who has shown a strength and courage far beyond his years. Who manages to still see the wonder in everything, despite all he has been through. Whose spark hasn’t dimmed, not one bit. He has faced all of this with love in his heart and a smile on his face. He has taught us all so much.

So this month we will Go Gold brighter than ever before. We will support the Children’s Cancer and Leukaemia Group in their quest to raise awareness, support and research childhood cancer. To find more effective and kinder treatments for children, because they deserve more, so much more than a cancer filled childhood. 

Most of all, this September, I look forward to watching Hugo charge into the next chapter of his life with his usual enthusiasm, joy and spirit. I look forward to seeing all he will achieve when he is free from the cancer that has restricted him in ways he doesn’t even realise. I will cry happy tears time and time again as I watch him achieve the ordinary and the great, and I will watch that spark, that never once dimmed, grow even brighter.

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