Removing the Monster that Lived Inside – Surgery

Surgery was like waiting on the most terrifying storm to break. We didn’t know what to expect and the fear of the unknown was somewhat unbearable. The effects of chemotherapy had been such a distraction from the reality that the tumour had to eventually come out. The chemotherapy seemed to do its job though, we had seen little visible growth from the tumour and had hoped it had shrunk enough to aid its removal.

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We knew the risks, like with any surgery it could come with consequences. It was predicted to last somewhere between 4-8hours as when they opened him up they didn’t know what it would be attached to or what would be needed.

Our consultant and surgeon both had a great way of allowing us to put our trust in them and feel at ease, well as much as we could. We valued everything they said and knew that they would do everything they could

On the morning of the surgery the lady surgeon turned to us both and said, ‘I’m really sorry that you’re in this position but I promise you I’m going to look after your boy.’ Paul rarely cried but this was one of those moments when the flood gates open and his chin wobbled in that uncontrollable fashion. These people who we trust our baby’s life with truly cared and we could feel every word she said. We both clung to that statement, he was leaving us for surgery and we knew that the team Nathanael had behind him would do everything they could to bring him back to us safely.

We were first on the list for surgery and at 9am they came for us. The anaesthetist went through his pain relief before we walked down, I was in bits. Nathanael was to get an epidural he had to tell us the worst-case scenarios and all I can remember is hearing the words paralysed, spinal injury and loss of life. It was surreal, I was being made walk through my worst nightmare.

We walked into a theatre room surrounded by what seemed like a ridiculous amount of equipment and a scary number of people. I held him tight on my knee and he smiled at me with those loving brown eyes as they put him to sleep. I gave him a kiss goodnight, it sounds so dramatic but this was major surgery and somewhere in my head I couldn’t help but worry would it be the last time I kissed him goodnight.

We both knew we had a long wait, Nathanael was losing a kidney and with it the monster that was invading him. I thought so hard about the discomfort he had been in and worried how his body would adapt without it. I actually worried that his misshapen organs wouldn’t know how to function without the tumour pressing on them. In reality the tumour was the full size of Nathanaels torso pushing top to bottom and then protruding out. Paul and I both agonised stupidly over how he would cope when half his body weight was removed. Could his one remaining kidney pick up the function of two and what if it didn’t? Those questions rolled around our heads continually.

It even got as ridiculous as worrying he would bleed out on the table. Our minds where in another universe, our bodies in ICU and every beat of our heart yearned to be beside him in theatre.

How could a child not even of one year be losing an organ and going through this? Our baby? It just isn’t fair. I should also add at this point so many people would often say,” Don’t worry my sister’s, aunt’s, brother’s wife was only born with one kidney and she’s as fit as a fiddle, he’ll be fine.” Yes, though that grown person didn’t have major surgery to remove the missing kidney, she didn’t have cancer cells invading her body and best of all she never had it to be missed. We had so many worries and unless you are lucky enough to never be in this situation it is impossible for me to write down what it’s like knowing your child is losing an organ and knowing that he is having major surgery to do so.

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I really don’t know how we filled those hours, we watched the clock knowing too well we would have no idea how long it would take, but we still watched and waited. I cried hard, really hard and the knot in my stomach was suffocating me. I could see Pauls worry, his tears rolled down his cheek in a way I’ve rarely seen, slowly and painfully while he tried so hard to hold it in. I don’t think there is much worse in life than seeing your husband cry. That strong head of the household with his head in his hands praying for God to spare our little boy.

We survived on coffee, I should add we both survive everyday on coffee. Our lives are fuelled by it but on that day it really was the only thing we both could stomach. As the clock slowly moved passed we had both settled ourselves knowing we had to be content with limbo, nothing was going to make this time pass easier.

Five and a half hours later I spotted our surgeon at the doors to PICU, I ran in maniac fashion to reach him.

“Everything went to plan” It was practically the only words I heard, all I needed to know was he was okay. He discussed with us about what looked like a third kidney had started to grow, my eyes stupidly must off have lit up but he soon burst my bubble of hope. They couldn’t be sure it was working and non-cancerous so it was removed too. His kidney, his tumour and this new growth had all been removed.

He continued to tell us that he had lost a slither of pancreas and in its removal the tumour had ruptured and leaked. We didn’t care, he was well and would soon be out of theatre that’s all that mattered to us then. We were so unaware of the consequences this was going to bring further down the line. That part will be for another day.

We were told to wait and they would call us when Nathanael was ready, but in true mum style I stood on the inside of the doors to ICU so I could watch for him coming. We had been warned that he may have a tube down his throat breathing for him and to be prepared for a jungle of tubes and wires.

There he was being wheeled into the ward, the palest ‘nakedest’ most perfect little body in the distance. I knew it was him straight away. Wires everywhere but it wasn’t important what was important was I could see his little chest moving up and down, no tube doing the breathing for him, it was all him. He was breathing.

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When we finally got to his beside I completely broke down, the nurse said to me “I know all these wires are daunting don’t worry he is doing great.”

No, that wasn’t even remotely why I was crying. There in front of me lay a skinny baby, with the most perfect flat stomach. Every inch of my body was crying with a relief like I had never felt. I could hardly believe my eyes, he looked totally different and Paul and I were in awe. In awe of our consultant for getting us this far, the surgeons for being so skilled, the anaesthetists, the nurses and everyone else who crossed paths with our baby boy. Their skills are amazing and we had in front of us our beautiful boy breathing with every inch of his body working perfectly. Neither of us felt the fear like before, it had been lifted and we knew our baby was exactly where he needed to be.

I don’t know if we had been previously in denial before about the severity and the size of his tumour but in those moments we realised how important it had been to get this surgery. It was saving his life.

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14 thoughts on “Removing the Monster that Lived Inside – Surgery

  1. My heart really does go out to you. I think of you all the time and pray that your beautiful little boy recovers completely. x

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  2. I can’t begin to imagine what you must be going through. No one, especially an innocent little baby should have to go through this, you’re a very strong and inspirational family and Nathanael is such a brave little fighter. Praying your gorgeous boy will be back to full health soon x

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  3. Sarah, I have just read your story, having met your Mum and Dad on Thursday. What can I say, just that you are an inspiration to us all. You have two beautiful boys and I just pray for strength for you and Paul and your family and for good health for your beautiful baby. I will be thinking of you all. Carrie

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