1000 Days

Sunday marked 1000 days of treatment. 1000 days since Hugo was diagnosed. 1000 days of living a variety of new normals.

So what does life look like after 1000 days?

It has been 6 months since Hugo was hospitalised with acute liver failure. After allowing his liver to recover, his chemotherapy was restarted and the doses have gradually been increased over the months, but are still lower than they were when the problem started. His liver function is being regularly monitored and I am on high alert for the symptoms that I would now recognise. It’s a delicate balancing act for his team. His chemotherapy needs to be high enough to do its job, but not so high that his liver is at risk. I have to trust that they are getting the balance right.

After 9 months of not walking, he is now back on his feet, able to walk unaided, with his strength and confidence building every day. I am spending more and more time pushing an empty wheelchair as he walks, or even runs, along beside me. 

It reminds me of the toddler stage. His stiff, wobbly walking, my heart so often in my mouth as I worry about him falling over or being unaware of the dangers of the road. Walking anywhere takes twice as long as he marvels at the trees or the sticks on the pavement. He stops to pick me Daisies, all the while singing happily. He is re-discovering the world and the joy it is bringing him is magical to watch.

He still needs help with things other children of his age are able to manage and is far from where he should be physically. There have been heartbreaking moments where he has become upset, where he hasn’t been able to keep up or join in, or it’s all just too much for his tired little legs. Thankfully these occasions have been few, and most of the time he is unaware of his limitations and is simply proud of how far he has come, just as he should be.

He has completed 2 terms at school and is now doing full days everyday, when hospital appointments allow. School has been great for him and his walking and confidence have come on so much. He has made friends who are kind and supportive and I know he has fun. He is a little behind where he should, his shyness and lack of confidence holding him back. 

My perspective is so different to what it might have been, had cancer not come along. I am relieved that he goes in happily, that he has made friends and feels cared for. I don’t wish for anything more at this point. However, I am so grateful to his school, to his teachers, who not only offer a supportive and nurturing environment, but who also have faith in him, who gently encourage him to achieve all that he is capable of, when I am afraid to expect or want more.

We’ve been lucky enough to have some lovely days out, including a trip to Legoland last month to celebrate the boys’ birthdays. 

There has been dressing up for World Book Day, hunting for eggs at Easter, birthday parties, a school assembly and dancing round the kitchen. We have managed to get away, to have fun and create some lovely family memories. Lots of wonderful, beautiful normal. 

We have continued to raise money for charity, with the help of the wonderful Team Hugo army. 

We have been spoilt with charity days out, gifts for the boys and Christmas parties. We have been proud to continue to raise awareness, to go gold, to support the charities that have come to mean so much to us. We have enjoyed helping to make a difference, to achieve something positive from the situation we find ourselves in.

Of course there has also been trips to the hospital for temperatures, a blocked wiggly and of course chemo. 

There is still medication everyday, the dreaded steroids, weekly blood tests, physio and hospital appointments. There is constant, exhausting worry and every cough, cold or out of the ordinary symptom brings with it fear and a reminder of how fragile his situation is. Even after 1000 days, it still feels far from normal. It remains difficult in so many ways, but there continues to be so much to be grateful for too, and that is what we try to focus on.

Hugo is now 5, the age he will be when he finishes treatment. The end is in sight.

He is growing up fast, his little personality developing. He makes us laugh frequently, his spark far from dulled by this experience. There is a cheeky side well and truly emerging, he squabbles with his big brother and can be frustratingly stubborn, but he remains kind and loving and he still gives the best cuddles.

Sometimes it’s hard to not want to wrap him up in cottonwool. With his mobility issues, his shyness and all he is having to endure, it is easy to treat him as younger than he is, to baby him, or make  allowances for his behaviour that I wouldn’t otherwise make. It can be difficult to find the balance between treating him normally, but at the same time being sympathetic to what he is dealing with. I’m sure he gets away with far more than he should, but in all honesty, I would give him the world if I could.

He continues to take all of this cancer rubbish in his stride. He takes his medication well, manages the prods and pokes and keeps smiling, always smiling. He is a brave and beautiful soul, inside as well as out, and he makes my heart sing with joy every single day.

We continue to try and take it one day at a time. To do our best for both of our children, for our family. To find the joy in the ordinary, to take nothing for granted. We excitedly countdown to the end of treatment, when the new chapter in our lives can begin.

So, 1000 days done, 163 days left. You’ve got this Hugo, you’ve got this.