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.

A couple of hours old
With big brother Henry
* His favourite animal is the monkey and his favourite colour is red (both of which were the inspiration for our Virtual Dash medals).

Our Virtual Dash Medal designed by Hugo
His favourite TV programme is Paw Patrol and he has an impressive collection of Paw Patrol toys that he looks after very well and keeps nice and tidy.

* He is fairly quiet and shy and lacks confidence, especially with people he doesn't know. Once he lets you in he is loving, fun and worth the effort it takes.  He is thoughtful, incredibly sweet-natured, kind and generous.

* He loves sparkly things and twinkling lights and one of his dreams is to go to Paris after being sent a postcard of Paris by night. It's on the top of our 'to do' list when treatment finishes!

Sparkly Paris by night
At In The Night Garden Live - loving a sparkly light!
* He can be stubborn and is a pretty impressive sulker! He likes to do things in his own time and in his own way. He's quietly determined and will keep trying even if something is hard. He is tougher, stronger and braver than he may first appear (and has shown this time and time again over the last couple of years).

* He is a mummy's boy, has been since the day he was born. He gives the most amazing cuddles and showers me with a love that I do my best every day to deserve.

* His hair has always been a little bit crazy!

9 months old
16 months old
It calmed down by about 2 years old. 

2 years old - 4 months before diagnosis
Then it all fell out!
Rocking the bald look!
It has grown back thicker, slightly darker and crazier than ever!

Big and crazy hair!
* He loves to dance. Around the kitchen, in shops, wherever. Being in a wheelchair hasn't changed this, he loves a good chair boogie too!

Having a boogie on holiday
* His cuddly bunny (imaginatively named Bunny) is his best friend. Hugo sleeps with him, asks for him if he is upset, and Bunny is never far from Hugo's side. Bunny doesn't leave the house though, unless we are going on holiday or to the hospital - although that has changed recently after Bunny was traumatised from an extended stay at GOSH after being left in the consultants office!

19 months old and 9 months pre diagnosis
Bunny keeping Hugo company on a hospital trip
Bunny having his obs done at GOSH
* He has a cheeky side, knows how to wind up his big brother and has a great sense of humour. He brings smiles and fun to our lives and makes us laugh every day with his 'Hugoisms'.

Cheeky brothers
Unsurprisingly David Walliams brought
out his cheeky side!
Brightening up a hospital stay
* He's amazing! (That's 11, but who's counting!)

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. 

What Would Hugo Say?

A few weeks ago the charity Bloodwise asked if Hugo and I would be the face of their Blood Cancer Awareness Month campaign. My first thought was to immediately say yes. To be able to share our story and raise awareness for a subject that has become so close to our hearts seemed like an amazing opportunity. But it also brought to mind a question that I have been pondering for a while now. What would Hugo say?