Halfway

We have now passed the halfway point of treatment.  Hugo is currently on month 20, with 18 more to go.  We are on the downhill slope towards the end of treatment.  That light at the end of the tunnel is getting ever so slightly brighter.

It seems hard to believe that so much time has managed to pass by.  In the early days, immediately following diagnosis, being this far into treatment was impossible to comprehend.  How would we do it?  How would we put one foot in front of the other and carry on?  The fear and confusion that surrounded us so completely during that time made it difficult to look to the end of the week, let alone months or years into the future.  Yet somehow we have, somehow we are doing it.

Back then we took it one day at a time in the hopes that reaching the final phase of treatment, the maintenance phase, would bring with it some small relief.  That a little normality might creep back into our lives again.  It was something to focus on, a belief that things would get easier, if we could just keep going.  It also brought with it feelings of apprehension.  Would it deliver all it promised?  Would life become easier?  How would we fair if it wasn’t all that we had hoped for?

We are now over a year into maintenance, 14 months to be precise and in many ways our life is most definitely closer to normal.

We have celebrated birthdays, Christmas, hunted for Easter Eggs and gone trick-or-treating.  Hugo has gone back to nursery and I have returned to work, albeit for less days than we previously managed.

Then there’s the rest of it, the not so normal stuff.  The daily medication, weekly blood tests and monthly hospital appointments. There have been temperature checks in the middle of the night, worried phone calls to consultants and dashes to the hospital for unknown ailments.  We have rushed to arrange emergency childcare and been forced to cancel plans.  Hugo has had to deal with the ongoing and gruelling drug side effects and we have struggled to learn what is to be expected and what is not. There has been constant worry and I have felt tired and emotionally drained just from getting through the day.  We have cried tears of fear and sadness and said goodbye to brave warriors who have been lost while we continue on.

But even with all of this, we are finding a way through.  We are living a new life that is hard and different, but somehow it is manageable.  A new life that we didn’t ask for, but have somehow learnt to accept and adapt to.  If we look hard enough, we can even see some positives.  Little bright spots that help make things just a little more bearable, that give us focus and help us carry on.

There is now charity work in our life.  We fundraise and try to raise awareness of childhood cancer and I have become a patient ambassador for the charity Bloodwise.  We do this to give something back to the charities that support us and others like us, to fund research that will benefit children in the future.  It also allows us to find some positivity in the situation we have found ourselves in, to help others who find themselves where we are.  It has given me a purpose, an interest and a passion in something that I didn’t have before.  I enjoy writing about our new life, to bring awareness and hope that it will help others realise they are not alone.

We have met some truly inspirational people.  I have seen kindness in others that humbles me and makes me want to try and be a better person.  I am grateful to have the opportunity to hold these people up to my children as shining examples of all that is good in this world.

There has been love and support from family and friends, who probably don’t realise what a difference their actions make.  I have watched my little family gather strength from those around us and comfort from knowing we are cared for and supported.   People who have our backs, our little army who have taken on our fight as if it were their own.

We have grown strong together, we are a team and although sometimes it’s hard, we try to be grateful for all we have and find the joy in the ordinary.  We embrace and celebrate the normal, because we are grateful for every day that the normal outweighs the not so normal.

I have the honour of having witnessed true bravery and courage in the children who walk the same path as Hugo.  I get to be amazed every single day by the wonder that is my child fighting cancer with a smile on his face and love in his heart.  I’m so very proud of him.  I’m proud of all of us and how far we have come.  So we continue on, one day at a time, filling our lives with as much normal as we can.  Watching that light at the end of the tunnel growing ever brighter.