After our conversation with our consultant we went home having the success of surgery stolen from us. The next few days we focused on making Alfie feel like he had his family back and making sure Nathanael’s recovery continued. He only had a two-day window to recover before we went back to his weekly chemotherapy schedule.
I was horrified that his little body wasn’t even getting time to recuperate but what we hadn’t realised at the time was that the leak in surgery essentially gave the cancerous cells a head start. My head could barely comprehend that they could possibly be spreading and growing elsewhere. So, we did what we had to do, we quite literally sucked it up and got on with it, we had a job to do and that was to set about making our baby ready for his fight again.
Our usual consultant was away and we were introduced to his colleague, little did we know that he would be unintentionally the person who would have to bare the news that would tear open a wound I don’t know will ever be fixed.
Chemotherapy wasn’t going to start today, when they told me that I remember being really confused as it’s what we had came here for. My head was screaming inside and my stomach wasn’t knotting it felt empty instead, I knew something was wrong and I wanted so badly to just lift Nathanael and run.
I think that was the only word I heard him say and it was something I had never even considered. I know we had been warned before that in the “worse cases” this could happen but I don’t think we had ever considered ourselves to be one of these “worst cases”, we had always been so optimistic. How would that even be possible, after all I’ve said before to the naked eye my baby was healthy and happy, and to me he was perfect.
Tears of absolute fear began rolling from my eyes, Paul and I were both in shock. I know this isn’t the worst news that poor consultant has had to give to parents but to Paul and I it was beyond anything we had expected to hear. We thought we had prepared for it all.
Everything we discussed after that was in a daze, chemotherapy wouldn’t be given today because everything was changing again and we had no control.
Nathanael was being classified as “high risk” due to the leak and the spread. A single page sat on his desk with Nathanael’s whole year mapped out with arrows and numbers. It wasn’t 20 weeks it was 34, and I could see in each of those numbered weeks Nates childhood being stole. It’s not his fault but I felt like he was stealing them from him, each individual tick was a week of his life where cancer was calling the shots.
He was going to receive four different drugs requiring him to be both impatient and outpatient, with new names and new consequences. I couldn’t even begin to start thinking about what those consequences would be.
Not forgetting the addition of radiotherapy alongside these. I don’t know what you know about radiotherapy but when someone told me that my baby was going to receive it I prepared myself for a day procedure. One session, in and out. Surely that would be the job done? Oh, how naive I was to this new journey ahead.
It was predicted that radiotherapy would be given over ten sessions starting straight away, with planning and meetings starting that week.
Ten? Yes, we discussed that my baby boy was going to get radiation shot into his body ten times. I couldn’t even grasp it and to be honest I barely understood but we would find out more when we met with the team in the City Hospital.
Go home and pack a bag it starts this Thursday. That feeling in my stomach was worse and the little man inside my head was telling me to run. To take my baby and run. Paul opened that door and I just about managed the words ‘I need out of here’ I could feel my emotions slowly consuming me as I clung to Nathanael in my arms. My mind was screaming they have this so wrong. I’ve put up with this charred for so long and I can’t put my baby through anymore. “Spread” and “High risk” were words I had never considered hearing that day.
Nate clung on my hip like any other 11month old, he’d made it so far and fought so bravely and he wasn’t even one. How could I ask more of him? How could I ask him to keep this up? I couldn’t. I was forcing him, he had no choice and like always neither did we, cancerous cells were threatening my baby and we had no choice but to fight in the way we were being told.
When you’re a mother and you hold your baby so tight, you rock them, feed them and love them with everything you have, you know them so well. I know that in hindsight that day I had a feeling of estrangement, I wondered did I even know my own baby? How could the cancer have spread? I didn’t understand, I let this happen to him right under my nose. I let his cancer spread but yet I didn’t even know about it.
I’m an over sharer (can you tell?) and I think that when you meet people it’s so easy to be someone you’re not. But I was bare, I was stripped of every piece of composure I had. I often wonder if I look the way I feel. Battered, bruised but always as strong as an ox for my littlest. This has changed us forever, and prepared us to never take anything for granted. Kiss your loved ones, tell them you love them and when your babies cry at night let them into your bed and hold them the way they want you to. You don’t know when fate is going to threaten to take that away from you.
Paul and I knew that we were not going to let this consume us, it wasn’t going to ruin our family and its threat couldn’t scare us into a corner. What did scare me though was the precautions we were going to have to take to ensure that didn’t happen. The long-term side effects of the chemotherapy seemed ever more present and even the thought of radiotherapy made me shudder.
Surely this is something an adult is meant to deal with, not a baby. We had to ensure he made it to adulthood, but at what cost to his health?
Thursday came and we entered the ward. We had briefly visited it before. For those who don’t know I should tell you that it comprises of 8 isolated rooms, like outpatients the ward has specialised nurses who are devoted to each baby that crosses the doors. They try to make it as safe and as ‘home from home’ like as possible for so many of the children. I should add that it is never empty and always brimming at the seams, like I’ve said before ‘we are not alone’ in this journey and sadly there are more children than you could imagine fighting a brave battle that no child deserves.
In short, the doxorubicin can cause heart damage so it comes with a new worry and with it a new regular procedure of a heart scan to monitor my baby’s heart function and to check for early signs of any damage being inflicted. The second cyclophosphamide is bad for his kidney. Yes, his one kidney he has left to keep him safe is going to be used and abused? It’s ironic, isn’t it?
False start, before we start the chemotherapy we actually have a meeting scheduled with the radiotherapy consultant.
That meeting went so well and Paul and I felt confident we could get through it until that was mentioned? Why had google not flagged that one up like a beacon on my searches:
The radiotherapy could possibly cause growth problems to his vertebrae as it would be shooting so close to his spine. It could mean that one side of his body could be shorter than the other.
I’m sure that meeting held so many other side effects and outcomes but to be honest my head and heart stopped comprehending after that. Things where getting serious and spiralling out of control.
Fertility was another major issue. It’s one of those ones when I look to the future I wonder how I will explain to him that we made that choice. We let them do these procedures to keep him here and to stop cancer from taking him from us, yet with that we might have robbed him of being able to make life himself. My greatest accomplishment is my children, nothing on this earth will ever top it and here I was signing a form to say I understood these consequences.
It stuck in me like a knife. The decisions and pieces of paper that I was signing for my baby was disclaimers that I knew that in protecting him we would also be inflicting harm intentionally. How could we do that to him? Irreversible damage to the person I cared for the most.
And that’s when I realised that we weren’t getting away from this. These scars where going to be forever.
My tears where gone again, I had nothing left and I would not be lying if I told you it has crossed my mind more than once that I should just lift him and run. Where to? Anywhere that would save him from this.
And then I realise I’d be running from the people who were trying to help him the most.