Lisa G.
Posted by

Teardrops

Lisa G.
Posted by
02 Dec 2015

7 days after his diagnosis Hugo is fitted with a port.

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.

20 July 2015

Read more at lifeloveandleukaemia.blogspot.co.uk

Comments

10.12.2015

Hi Lisa,

What a powerful blog! I can't begin to imagine what it must be like to sit and watch your little boy have to go through something like having a port inserted at the start of what you know is going to be a really long journey where they essentially have to make him sicker to get him better again.

Having to stay so outwardly strong for him whilst feeling so frightened on the inside must have been so tough and in many ways I think it's almost harder for the carer from an emotional point of view than the patient.

It sounds like Hugo took it all in his stride and I will read your blog with interest to keep up to date with his progress.

Thanks again for getting in touch and sharing your experiences so openly - you've touched upon feelings and issues that a number of parents have to face when their little ones begin treatment for blood cancer and I'm sure it will be an enormous sense of comfort and relief to others to know that they're not the only ones to feel that way.

The important thing is that you're not alone through any of this and we are here to help you and your family in any way that we can either through our support line on 0808 2080 888 or by email at support@bloodwise.org.uk

Do stay in touch and remember that we're with you and Hugo every step of the way.

Andy