My Other Child

A few months ago I posted a photo of Henry on Facebook. We were on a day out, just me and him. A treat day to spoil him a little, because it's tough when you're the sibling of a child with cancer.

It received more 'likes' than anything I had previously shared and anything I have posted since. Henry was delighted and enjoyed reading the kind comments. I was pleased that it had given him a lift and proud that I was raising awareness, telling the whole story of life with cancer.

But it didn't. It didn't tell the whole story, far from it. It was a shiny social media snapshot, easily taken and easily shared, but it was just a glimpse. A brief moment in the spotlight for my other child.

It didn't tell of the frustration and anger that Henry often feels, much of it directed at his brother, at the inevitable imbalance of attention. Of how this anger sometimes spills over into his behaviour and affects his school life.

It didn't show the counselling sessions we attend where Henry tells them he feels less important, or the times he has 'jokingly' told me that he sometimes wishes he was the one with cancer.

Or how his confidence has dipped and his spark has dimmed. The questions he asks about blood cells, about cancer, about death. The conversations where he struggles to articulate how he is feeling, because what 9 year should have to try and put this into words.

How so much of the time his life seems unfair and no longer entirely makes sense. It doesn't tell of the sports days I have missed because I am at the hospital, or the days out that don't happen, or how often he is aware that Hugo needs to come first. Why sometimes people ask after Hugo and not him, or why Hugo has a Facebook page and doesn't have to eat his vegetables. Why the rules are different for him.

It doesn't tell of the guilt I feel in my role as a mother. That maybe we have missed something, that we aren't doing enough. Did we take for granted for too long that he was fine, all the while knowing that he couldn't be, not really. If we as adults struggle to make sense of this strange new normal that has become our life, then how could he possibly be fine?

I suspect much of his behaviour is a natural stage of development for children of his age. To start to doubt themselves and feel frustration. To begin to realise that perhaps they are not the best at everything after all, to dislike and argue with their siblings. But Henry is being forced to deal with so much more in his life and this has exasperated things. Made it a little tougher than it might have otherwise been, brought to light feelings and emotions that might otherwise have been passed by, or saved for a time when he was mature enough to process them.

Whether it is a phase or because of Hugo's illness no longer matters. I have a 9 year old who has now spent over 2 and a half years of his life feeling like the other child, and that is just not fair.

However, it also doesn't show how much more there is to Henry. How brilliant he is at building lego, the wonderful imagination he has, or how hard he works at his swimming. How he is always willing to give anything a go and try new things.

It doesn't show how often he tells me he loves me, or of the cup of tea he wanted to make me on Mother's Day.

It doesn't show how every single night, without fuss, he comes upstairs and pretends to search for Hugo, when we can all see he is hiding under the covers, again. That he helps and encourages Hugo with his walking and looks out for him at school. Or of the beautiful bond that is developing between them.

Or that he knows and appreciates the treats we get because Hugo is ill. How much he has enjoyed the charity trips to Legoland and Chessington, the gifts he receives and how proud he is that he has now met the wonderful David Walliams 4 times.

It doesn't tell that he tries his best to understand Hugo's condition and accept the unfairness of the situation.

It also doesn't show how very proud I am of him. That despite everything, despite the difficulties and all that goes unseen, he is still somehow managing to be an amazing little person.

We will continue to put one foot in front of the other. To try all we can to make him feel valued and important, to balance things out as best we can. This is his journey too and we will help him and trust that he has the strength to get through it. That he will come out the other side stronger and wiser because of all he has endured. That his confidence will grow and his spark will set the world alight. Because he's a fighter too and he is so much more than just my other child. You've got this Henry, you've got this.

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?

All About Hugo!

For those who have never met him, here are 10 things about the superstar that is Hugo....

* He is one of only 4% of babies who are born on their due date. It was a speedy labour lasting only 3 hours from waters breaking to him being born, and only 10 minutes after we arrived at the hospital. He arrived with his hand above his head, in a superman pose. I should have known then that he had superhero abilities.

The Long Version

Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal. 

We have these every so often. I don't tend to write about them, because everything turns out to be ok. There's nothing to worry about and it just doesn't seem newsworthy in the bigger picture, once the moment has passed. But I should. Because these bumps are so much a part of our cancer journey. They are the reason why our life is so far from normal, they are the story behind the chemotherapy and the more familiar aspects of a cancer experience.

Bring it on 2018!

So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin.

I remember, just after Hugo was diagnosed, reading that treatment for his type of leukaemia would last just over 3 years. I thought it must be a mistake, a bizarre typo. How could life continue with any semblance of normality for that period of time. How could anyone manage 3 years of chemotherapy, let alone a child, my child.

One Day Cancer, You Will Be a Dot

Today it has been 2 years, 4 months and 5 days since Hugo was diagnosed with acute lymphoblastic leukaemia.  

The significance of this day?

He was 2 years, 4 months and 5 days old at the time of diagnosis.

A Bumpy Road

A few months ago I wrote about a bump in the road. Hugo had broken his leg and there were questions over his bone density and muscle weakness. My head was spinning with all the 'what ifs' as we waited for answers.

Hugo has been unable to walk since the break. There has been an inconclusive bone density scan, a painful nerve conduction test, a pause from medication, X-rays and most recently an MRI scan to rule out neurological or spinal issues. He has had physio, hydrotherapy and daily exercises. We have had more frequent visits to Great Ormond Street Hospital as they try to understand what is going on and help him get back on his feet.  It has been over six months since the plaster cast came off. There are still questions, uncertainty and worry and I am still wondering just how big this bump in the road is.