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. 

Sometimes he even pushes his own wheelchair!
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.
Picking Daisies for his mama
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. 

Walking the last little bit of the school run
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. 

Thomas the Tank Engine and
Harry Potter on World Book Day
We have continued to raise money for charity, with the help of the wonderful Team Hugo army. 

After completing the Royal Parks
Half Marathon for Bloodwise
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.

Delivering chocolate to our local hospital for Mother's Day
Hugo on the Bloodwise website during Blood Cancer Awareness Month
Going Gold in Epping for Childhood Cancer Awareness Month
Our wonderfully supported Bake Sale
Of course there has also been trips to the hospital for temperatures, a blocked wiggly and of course chemo. 

An unexpected trip to hospital for a blocked wiggly
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.

"Look, I'm a Vampire!"
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.

Love that little face
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.

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.

He is Here

So September has arrived, which means the start of both Childhood Cancer Awareness Month and Blood Cancer Awareness Month. A month where I try to raise awareness, to fundraise and share an insight into the world of childhood cancer. A month that has become incredibly important to me since Hugo was diagnosed with acute lymphoblastic leukaemia just over 2 years ago.

However this year is just a little bit more important, because this September Hugo starts school.