‘One Day at A Time’

Tuesday arrived and loaded with what little information we had previously been given and the dribble that Dr Google had provided us with we headed back with our ‘happy and healthy’ baby boy.

He had been fasting since the previous evening and was taking it in his stride. Paul and I had hardly slept. I think it quite possibly could have been the worst weekend we have ever had. Watching other people enjoying the New Year was agonising. I lost count of the amount of messages and people who sang ‘Happy New Year’ at us. Happy New Year, are you kidding me? It was like a kick in the teeth every time. No one knew only our closest family members and the rest of the world had no clue that our whole world was closing in on us.

Paul done an awesome job of prepping me, to be honest I’d have been on the Valium or some sort of sedative medication by this stage had he not been holding me up the whole time. I’d stopped crying and we were ready for this. I should also add our ever amazing parents had stepped up and although it was hard for them to hold it all together they had Alfie totally spoilt. He was delighted to be having back to back sleep overs, alternating between my parent and Paul’s.

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A biopsy and a scan, we can do this.

“We forgot to schedule it.”

I’m sorry what? I recalled being told he urgently needed these. Nothing seemed to be urgent anymore. Did no one care?

We walked the corridor of the ward up and down taking it in turns to content a hungry Nathanael while someone tried to sort something. To top it off I breastfeed him so he angrily was banging his head of my chest which added to the guilt. All the while I felt like I could physically see Nathaniel’s stomach swelling by the second. Time was moving so slowly and by 1pm we werent any further forward. As each hour passed we both grew anxious, for all we knew Nate was a ticking time bomb waiting to explode. Its how he looked and how both of us felt.

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I broke.

I felt like my legs where crumbling  at the knees and I remember shouting in despair (like a lunatic in hindsight) “Please someone just help my baby”

Finally at 2pm they took him for the scan, it sounds silly but after such a time of frustration I started to relax knowing that someone was finally trying to find out what was happening our baby. They had to put him to sleep for the scan and under any other circumstances I think I would have been distraught but right then and there I couldn’t wait for them to just get on with things.

He was an absolute champion. They put him off to sleep and when he woke up in recovery he smiled cuddling in for some milk like nothing had happened.

Back to the ward and we had an anxious wait for the scan results it was Tuesday and they were hoping to schedule the biopsy for tomorrow or Thursday.

A doctor came from the Hematology and Oncology Department to introduce himself and talk to us about Wilms tumours. We didn’t realise then how involved we would end up being with him and what a big part he would play in Nathanael’s treatment. To be completely honest I don’t have a clue what he told us that day its such a blur, but what I do remember is I couldn’t stop staring at a booklet he was holding. It was like he was silently using its words to prepare us for what we longed not to be true.

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I still think back then they knew exactly what Nathanael had they just needed the piece of paper from the biopsy to prove it.

Wednesday was a long day we fasted Nathanael to discover an emergency meant his biopsy was going to take place on Thursday.

We again had our visitor from Hematology, he was such a nice Doctor and seemed to have a great way of delivering rubbish news without sending me into a panic. I couldn’t help but hate to see him coming our way though, after all, he was the man who had handed us the booklet that read ‘Cancer’.

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Around 11pm that night a surgeon came to go over a consent form for the biopsy that was scheduled for the morning. After going through the biopsy procedure and the long list of complications that accompanied it I could barely even hold myself up let alone sign the consent form. Paul signed it as I tried to silently contain my sobs. I found myself at a new stage of emotions something I have never experienced. I can’t even describe this emotion, if I try to write it down for you I don’t know if I could do it justice.

I couldn’t breathe, I couldn’t stop crying and I couldn’t control my own body. I thought before I knew what crying was but yet I had never cried like this before. I walked to the front doors of the hospital and I cried so hard I screamed. I wondered if it would ever stop, if I could ever get it under control and stop the sobs. I was crying for Nate for the pain my baby was going through, the torture he had every time someone came near him. I was crying because I didn’t understand what was happening. His life, his health and his future was starting to become out of my control. The fear of cancer taking over our babies life was too much. I couldn’t make things better. Nothing I did could make him better. I stood outside the hospital staring out onto Belfast wishing that someone, something could come and help my baby.

I sat on that seat for so long I think Paul had started to go into melt down looking for me. My poor mummy says I phoned her inconsolably howling down the phone “my baby, my baby.” To be honest I have no recollection of phoning her. I just know she arrived with Frankie (Paul’s mum) at the hospital half an hour later in a frenzy of panic. By that time though I had finally somehow got myself together, I had scared myself. My emotions were out of control and I didn’t deserve to be like this. It wasn’t helping anyone. It didn’t help Alfie at home without us, it wasn’t helping support Paul in the way he had been holding me up and it most certainly wasn’t going to fix my precious baby who was oblivious to it all.

Paul and I made a pact that night that we did this together and no matter what we had to remain positive even though we couldn’t predict the future, it was ‘one day at a time’.

People joke about needing to be collected by the men in white coats and I actually think I could have been a prime candidate. I’m not saying I don’t cry anymore, I cry a lot but in the next few days when everything started to unfold and we would receive Nathanael’s diagnoses remembering that night is what helped me to hold my ‘shit’ together.   That and the realisation Nathanael’s care was out of our control. We had to trust the professionals, after all this was the start of us depending on them making sure Nathanael had a long and healthy life ahead.

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22 thoughts on “‘One Day at A Time’

  1. You are a great a mother and father.
    He is So lucky to have you both and perfect brother Alfie.
    I am praying everyday For the wee champion 💪

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  2. I couldn’t even begin to imagine what you and your family are going through. Sharing your story will help somebody and that’s a good thing to come from this. I have no words and I’m sure you’ve heard them all by now but I’m thinking of you & your baby and hoping things turn around for you.

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  3. May God continue to bless you all with strength, peace, courage and healing. Lots of people are praying for you all. Love and Gods blessings to you all. Xx ❤

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  4. Oh my I’m scared reading this- reading how distraught you were at that point… as parent’s our worries when our children are small are ‘have they had enough to eat’ ‘ are they clean ‘ happy ‘ I can’t even begin to imagine the fear of what was going on with your precious boy. God bless you both you must have a strong bond together to get you through one day at a time and staying as positive as you can in the situation. God bless you all I hope God gives you the strength you need X

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  5. Thinking about you all at this time Love and prayers God is real and only he can take away your pain Lots of love Alan & Annette Mulholland

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  6. Sarah, I met you at the breastfeeding workshop you helped at in June last year. I cant believe what I’m reading. I can’t even believe this is happening to your precious little boy who indeed on the night of the workshop was so happy & content. From this brief encounter with you I could tell that you are a very strong person and a brilliant mother. Praying for you all.

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