“We Have Misdiagnosed Your Baby”

Our consultant is some kind of genius, Paul and I think so much of him and we literally take his word as gospel. We have to. 

 He has the hardest job and you can see it in his eyes when he’s breaking news that he knows he is accidentally the person who is crumbling your life like a biscuit in front of your eyes. 

 “I’ve something to discuss with you both”

 I froze, we knew what we were doing we only had eight more sessions left of radiotherapy. No, I’m sorry but my instinct reaction was to say, “No, you don’t”. Nothing, not even the journey we were already on could have prepared us for what we were about to discuss.

 After the tumour was removed it is sent to pathology there they can stage it and tell us all how nasty it is. After Belfast it moves to Cardiff, the centralised pathologist. 

 Here they had decided that Nates tumour was really nasty. 

 Nate Tumour

It even looks nasty and looking at this picture I still can’t fathom that this lived inside our baby boy.

‘Misdiagnosed, it’s not a Wilms tumour”. It was like he was talking in a foreign language, something I knew nothing of and could barely string the words together “Clear Cell Sarcoma of the Kidney”

I wish I could say that my world closed in and that I was devastated but to be honest I wasn’t. 

I wasn’t because I didn’t understand. We had came this far and 4 months in I was just about wrapping my head around what was going on. I was in shock and possibly denial, I don’t know what you would call it but my body wasn’t even screaming. It was calmly watching a fictional conversation happening. 

 I kept looking at Paul for inspiration, maybe even a reaction because the empty gaps that my big mouth usually fills in a conversation was blank. Surely if I said nothing this would stop? 

But no, ‘high risk of spread’, ‘high risk of relapse’, ‘brain and bone cancer’ it was like being in some kind of trance and we just weren’t taking it in. 

 We left and I clung to Nate so tightly. He was perfect. What where they even talking about. He was coping so well with every blow they had threw at him. I didn’t believe it. They have it wrong. 

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I’m not a doctor, a pathologist or any type of specialist but my head was laughing at that conversation. How ridiculous? I’m the one with a PHD in my baby and they have this wrong. How silly they will feel when they realise.

We took him home, made everyone dinner and I started to put Nate and Alfie to bed. He was roasting, he had been fine earlier? This can’t be happening? Infection. It’s going to need a whole other blog of its own. Every superhero parent with a child on chemo knows infections are our worst nightmare. Three days at the least of antibiotics and the fear of a seriously sick child is ever more present. 

 I started to cry and panic, everything around me just felt like too much. My head was spinning in circles, I don’t know if I was scared of infection or if in actual fact I was petrified that the conversation we had had earlier was starting to sink in. 

 My baby had a Wilms tumour and I could handle that. How could this be happening to our baby? 

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I recall a particular nurse bluntly saying to me one day at the very start of this journey ‘your ‘very lucky’ Wilms is one of the ‘best’ cancers to get’ we were meant to be comforted by the fact that it could be successfully cured and had little chance of relapse. 

I found it patronising back then, but what did this mean for us now? What happens when you don’t have one of the ‘good’ cancers? What happens when you have a high chance of relapse? What if it spreads to his bones? What piece of advice would she have for us now? 

 I think it’s the worst thing in this whole journey that anyone has said to me because when you get put into a different bracket it makes your child’s outlook look dark and bleak even when they are so bright and beautiful. 

That weekend we spent in hospital on antibiotics. Nate went from having a horrid temperature, being pale and lifeless, clinging tightly to me for protection to climbing the walls hyper and unsettled after some much deserved love, antibiotics and platelets. I walked the corridors for hours at night with him and while walking I googled and ‘educated’ myself. 

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 I soon learnt that in many case studies the information was limited. This was rare, very rare, so rare that the survival rate was small and limited but yet the study was also small and limited. How accurate could this information be? 

 I cried. 

 I cried a lot. 

 Look at him. He’s perfect. He’s my version of happy and healthy. He might of had a tumour in his stomach but it’s gone now. We are meant to be just doing a ‘clean up’ job, making sure that every piece of disease is gone. Yet here we are and all we could think of was spread. 

Radiotherapy was cancelled as he wasn’t well enough and to be honest I was relieved for him. Everything had got too much, I needed him to have a break but unfortunately even though he was getting our version of a ‘two day holiday’ we were stuck in hospital waiting for tests to ensure this monster hadn’t spread anywhere we hadn’t considered. 

Bones, I agonised at his bedside. Development so far on movement had been limited and we had put it down to chemo. What if this was because of something else. I had been having the worst nightmares since January but they had gone to the next level now I couldn’t close my eyes without my mind taking me to places I had never considered. 

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To top it off we hadn’t told anyone. I couldn’t. I felt like Paul and I could take this for Nathanael and deal with it, but we couldn’t ask our family to do the same. It hurt so much knowing how devastated they would be. The worst is when you break this type of news to someone else your coming from an uneducated stance and when they cry and question all you can do is either get angry or cry helplessly with them. 

We had been in hospital all weekend, Nate had picked up and by Tuesday I started to get suspicious they were keeping Nate until they scheduled a bone scan. The threat was real. I went back to my denial it wasn’t happening and as always with Paul holding me up we could take on the world for our baby. 

After a few anxious days the bone scan results came back to say everything was as it should be. The relief was overwhelming but I couldn’t help but feel that the threat was still strong. Cancer was ruling our lives again. A new diagnoses and with it we entered a whole new stage of stress and worry.

How could this have happened and how would this ever be our ‘new normal’? Will we live the rest of our lives in fear for our baby? 

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18 thoughts on ““We Have Misdiagnosed Your Baby”

  1. Praying and sending the most positive and healthy vibes to your family and your superhero sons. Nate is adorable and clearly has the perfect parents to guide him through this anxious journey-you are so brave and strong (although I’m sure at times you feel nothing like that-that’s in fact when you’re at your strongest, when you’re at war with the darkness). Thank you for sharing your experiences, we can all learn something from the way you express your thoughts. Lots and lots of love and hope and positive thoughts to your family from ours, xxxx

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  2. Hi Sarah and Paul my self and Stacey have been silently following your blog in the background and we both are just amazed how you both pull yourselves together and get on with life as best as possible and credit where credit is due to you both, but from reading this lastest blog im gobsmacked, speechless….. we have are first little 1 on route in december and it really just makes us think that this could b us and we shouldnt take health for granted…. we may not have seen or spoke to yourselves in quite some time possibly hello in passing but back in the day of the “top carpark” yourselves wer 2 of the nicest people i had the privilage of meeting and socialising with and under no circumstance do you, paul and ur little family deserve any of this!!!!! Mine and Staceys heart goes out to use all….❤ stay strong, positive and use will get through this…….

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    1. Wow Neil thank you for leaving such a kind and heartfelt message. We really appreciate it. I’m so excited that you guys are starting a family together, it really is the most amazing, challenging and beautiful experience. It does put things into perspective for us now, all we dream of is a healthy family. I hope Stacey is keeping well. I will be looking forward to hearing your good news and hope we will be sharing news of a cancer and treatment free Nate in December too!! Xx

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      1. Stacey is keeping very well as far as pregnancy goes hardly any sickness or cravings not even grumpy 😂🤣 thanks for asking, we were away today to our 20w scan and all is well and as it should b.

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  3. Hi Sarah, I have been following your blog religiously and have conplete admiration for you and the strength and courage you display. I honestly don’t know how you and your husband stay so strong, little Nate just looks so happy in every picture you share, you must be so proud of him and his big brother. Such amazing strength from the four of you, I am in total awe. Keep fighting. I will keep you in my prayers and pray that your little Nate will return to full health very soon. Catriona xx

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    1. Thank you Catriona for taking the time to read our blogs and messaging. Nate and Alfie definitely keep us strong, we always find the strength from somewhere no matter how much we want to give up at times. Nate is doing well and we hope by Christmas/New Year he will be cancer and treatment free! Longing for those days to come. Thank you and lots of love sarah xx

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  4. Prayers for your gorgeous son, Nate. May he receive all the treatment he needs to make him well. You are wonderful parents and you’ll get the strength to nurse him back to full health. God bless you all.

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  5. Sarah and Paul, I can’t even begin to imagine what you are going through, Alfie and Nate have such strong and inspiring parents. Prayers and thoughts are with you all.

    Stephanie, Stephen and Alfie x

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  6. I’ve been reading each post you have written this evening and I am in complete awe of your strength, courage and bravery. Thinking of you all, especially your little fighter. Sending lots of love, Becky xxxx

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