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.

But it wasn't a mistake. 3 years of treatment. 3 years of hospital stays and appointments, of uncertainty and worry, of prodding and poking and of medication with its nasty side effects. More than half of Hugo's life. It was huge and unbelievable then and it still is now.

It may sound like a cliche, but it has turned our lives upside down and changed them in ways we could never have predicted and in ways that I know are impossible for others to understand, unless they have been there themselves. I suspect that even when these 3 years are over that the emotional impact will last much longer, that finishing treatment is far from the end of this experience.

But, somehow we have found some normality, the days, weeks and months are passing by, often quicker than I imagined, and Hugo is managing, we are all managing.

Sometimes it's hard to summon enthusiasm for even the simplest of day to day activities. This experience is draining and it's often easy to go to that dark place, to see nothing but the difficulties, the things we are missing out on, the unfairness of it all.

But while I am so looking forward to the end of treatment, I also don't want to wish life away. We still have 8 months of treatment to go and that is far too long to not get on with living. So, hard as it may be at times, we are determined to enjoy every moment possible, to try and feel positive and grateful for all that we have, even if life is not how we imagined.

The next 8 months will see a series of 'lasts' for Hugo; his last course of steroids, his last IV chemo, his last weekly, daily chemo, his last birthday on treatment, to name just a few. They will be celebrated not only because they are 'lasts', but because they are representative of all he has come through, of all he, and we as a family, have overcome. It may seem strange, but I am looking forward to it. These will be our small victories in this horrible journey. The 'lasts' and the ability to keep smiling, as Hugo does so wonderfully.

I could worry about tempting fate, of celebrating too soon or counting down with too much enthusiasm. Sometimes I feel nervous, I'm always aware that the finish line could suddenly disappear or move further out of reach and the word 'relapse' is never far from my thoughts. But it wouldn't change what he has been through, all that he has already endured. Whatever the future may hold, he deserves these celebrations, he has earned them.

On New Year's Eve we wrote a list of things we would like to do, places we would like to go and things we would like to achieve during 2018. We plan to spend this year counting down, ticking off those 'lasts', celebrating and creating wonderful family memories. To do our best to focus on the positive and not let the difficulties bring us down or takeover.

New Years Eve!
We are so fortunate to have had such wonderful support from our family, friends and people who have been moved by Hugo's story. We want to share this with them, to shout from the rooftops, to enjoy all the good. There is much to be worried about, but there is so much to be grateful for too, so much light in the darkness.

And in the middle of all this is a little boy. A kind, sweet natured, loving little boy who doesn't fully understand how amazing he is or comprehend the enormity of what he is living through. Who doesn't go to that dark place or see the difficulties or unfairness. A little boy who fights with love in his heart and a smile on his face, who deserves all the fun we can muster, all the victories and celebrations, all the light.

So bring it on 2018, we are ready for you!
The List!

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?

Things I Have Learnt

It has now been 2 years since Hugo was diagnosed with acute lymphoblastic leukaemia.  24 months of our strange, new, cancer filled life.  The learning curve has been steep and I'm pretty sure it's not done yet.  Here are a few of the things I have learnt.

Today I cried

Today I cried.  Not a huge great sob fest, just a little tear, catching me unaware.  I cry fairly easily.  Sad books or films on the TV, even adverts have been known to set me off.  However I don't often cry  because of Hugo's illness.  I think the fight in me stops me, it just feels pointless, a waste of my time and of no use to Hugo.  But today I did, just a little.