Since diagnosis, 7 days ago, I have had to hold Hugo as he cried while numerous medical staff tried time and time again to insert fresh cannulas into his small hands.  Telling him it will be okay, when it was anything but okay.  Knowing it needed to be done, but still feeling like the worst mum in the world.  Wondering whether the trust between us would be forever damaged.  Now today, they have surrendered and this morning me and his dad took him down to theatre to have a Port inserted.  This is small chamber which is placed under the skin, over the rib cage, which links up to the jugular vein in the neck.  It can be used to take blood and also give chemotherapy, fluids and blood products.  Hugo would have had one fitted in a few weeks, but it has become necessary to do it earlier than planned.

I held him again, this time as we watched the anaesthetic take hold and he slipped into a deep sleep.  Then I went back to our room and I cried.  For the first time since this all started, I really let go.  Actually, I didn't cry, I sobbed.  Proper, shoulder shaking, tears streaming, ugly looking sobbing.  I sobbed for my little boy, for everything he has already endured and for everything he will have to endure over the next 3 years, for the childhood that is being taken away from him, for the pain and drug side effects he will experience, for all the things he and his brother will miss out on.  I sobbed because I'm scared and frightened.  I sobbed for the unanswered whys, for the unfairness of it all.  I sobbed because I was physically and mentally exhausted and sad, so very sad.

The operation went well.  It is a huge relief that taking blood will now be a simple, painless process for Hugo.  The Port has been left accessed which means there is a small tube hanging from his chest which will be used to talk blood and administer fluids and medication.  The nurses refer to this with the child friendly name of wiggly.

I have just watched with trepidation as they administer the first dose of chemotherapy, a drug called Vincristine, using Hugo's wiggly.  I have been dreading this moment.  This isn't the first time he's had chemotherapy, but his previous does was administered under anaesthetic in theatre.  I didn't have to watch, I could almost pretend it wasn't happening.  This time there's no hiding.  It feels like a pivotal moment somehow, no pretending anymore.  Hugo is absolutely fine.  He sits on his bed tucking into a post surgery feast of cookies and mini baby bel cheese, while watching television.  He doesn't bat an eyelid as the drug is slowly syringed into wiggly.  Any nerves I felt turn into relief at the ease of it all and pride at Hugo's calm reaction.


  1. I've teared up reading this Lisa. Firstly, you are an awesome mum and I know you know that. But I also know how impossible it is to feel anything other than awful when doctors and nurses have to do things to your child that you know hurts them, and all you can do is hold them while it happens. Hugo is such a brave boy, such an inspiration, and so lucky to have such a loving family to support him through all this.

  2. Another one in tears - this is so very sad but written so bravely. I am so sorry to read about just some of what Hugo has already been through, and you and Rich too. You have so much strength Lisa, I just wish it wasn't being tested in this way. When you can, please keep writing though - you do it so well and it will be such a great record for Hugo and a big help to others, and I hope also to you xx