You know when you have one of those days. Where you get a curve ball thrown at you, AND it is from left field
That happened to us – a month or so ago.
Everyone is aware of our super-Kenz. One in a million.
She had a routine renal ultrasound – investigation for her ongoing hypertension. Fairly straightforward. Or so it seemed.
She was on Camp – year 6 Urban Camp – a pinnacle of the Primary School senior year. I picked her up at 0730hrs – she had been fasting since the night before – hard on camp! She was dressed in her new clothes – a school camp required a shopping trip – she literally had nothing! The exhaustion was real. Already. On day two!
I was meant to be attending a Grad Nurse Study Day – so was going to be super late. No problemo.
Routine ultrasound – although I noted that the technician spent a fair amount of time on Kenz’ left side – enquiring innocently the reason for the ultrasound. We were sent off with “I will have our Doctor look at the images – we may call you back”. I was not concerned – I had a hungry Kenz to deal with.
We were called back, and the Medical Imaging Registrar asked to have another scan of Kenz left side, stating “the images were unclear – just checking the anatomy”. No red flags for me – just wanted to get Kenz back to Camp, and me back to my Study Day.
In true Kenz fashion – she spent the short car ride to ScienceWorks explaining the photographs she had taken, in intimate detail. The minutiae that she sees – phenomenal. I cannot wait to print her photos and hear her story.
I whipped back to my study day and settled in for learning.
Message from Wilbur “ring xxxx about an appointment for Mackenzie tomorrow”
I shot out of my lecture quick smart and called him for confirmation, then called the number.
“Hello – its xxx from Oncology – we need to make an appointment for Mackenzie tomorrow”.
My world stopped. The curve ball from left field hit me. Winded me.
What. The what.
I signalled to someone for pen and paper, and somehow wrote down the details through eyes filled with tears, and rising panic. Then that same person brought my lecturer out whilst I sat and all manner of oncological presentations flashed before my eyes.
I rang Wilbur and explained. He said “what is oncology?”. “Cancer Wilbur, cancer”. His silence was overwhelming. Imagine having to explain to your husband, who is alone in a paddock, covered in chook poo, what oncology is.
Somehow I got myself upstairs to my ward and saw my Nurse Co-ordinator and NUM. They were amazing. Then my phone rang. It was Kenz’ geneticist, apologising profusely for the previous phone call – she had wanted to speak to me first – to clarify. Yes. An abnormal lump has been found atop Kenz left kidney – on her adrenal gland. Approx 2cm. Appointment with Oncology Consultant tomorrow to discuss. Not a cyst. Maybe related to hypertension. Maybe related to NF1. Who knows?
What could I say?
Somehow, I was holding it together. Just.
A few words of love and wisdom (and strict instructions not to Dr Google), I walked to my car, dialling Wilbur’s number along the way. I visualised him standing in the middle of a paddock, listening to his wife utter “oncology, appointment, lump, mass, cancer” through tears. Somehow, I managed to drive to the footy ground where Madz was playing (an hour or so away).
Still – just holding it together.
That night – not much sleep was had. Wilbur and I lay entangled on the couch, watching ‘Suits” (thank goodness for Harvey!).
We picked up Kenz from the National Gallery Victoria the next morning – she was slightly miffed at being pulled away from her Camp…. again.
Walking into the Children’s Cancer Centre was heart-breaking. We hadn’t told Kenz the exact reason we were back at The Hospital, only that the doctors needed to clarify something. Thankfully she was too exhausted to ask questions, but surely it was hard not to realise where she was – little bald children, and the word CANCER written all over the place. She said nothing.
Wilbur and I were mute – holding hands and avoiding looking at each other – the ever present threat of tears just a loving smile away.
The consultant was lovely – she seemed very ‘unconcerned’ about Kenz’ lump, and didn’t quite think we should have been urgently called in. We requested that Makcenzie have a full-body ultrasond. At the least, it would give us a baseline for any neuron tumour growth or presence (neuronal tumours occur in NF1), and at the worst – it would show the spreading of the cancer that could have been riddling her body, for all we knew.
We delivered her back to Camp – she chose not to discuss where she had been – only to say “I don’t think i want to know, or think about it”. Fair enough.
An MRI appointment was made for a couple of agonising weeks later. I was a mess – Wilbur slightly better. The MRI was a nightmare in itself. I planned to finish work a little early, and head downstairs to meet Wilbur and Kenz – then Wilbur would drive home, and Kenz and I were to leave once the MRI was complete. Unfortunately, in my wisdom, I had omitted to tell Mackenzie that she would require cannulation (a small needle in her arm). As I was leaving my ward, I received a message from Will – “ best come quick, things are going pear-shaped”.
Yes. They were. It appears that I should have informed Kenz of the cannula, and I had told her to wear pants that had metal in them (unknowingly!) – so I was met with a teary, inconsolable child in plastic scrubs, hiding behind Wilbur’s back, avoiding the MRI tech at all costs.
I calmed her down, and she gripped my hand as the little needle went in – “I should have brought my stress ball” she said, through gritted teeth and sobbing.
We finally settled her on the MRI bed, and an hour and a half later, we were out of there.
Kenz still refused to talk, or think about what or why she has needed the MRI, or why she was in the Oncology Clinic.
We spent the next two weeks worrying. No Dr Googling. Just worrying – emotions would flit between despair and ‘she’ll be right’. My workmates were awesome, as were my villagers.
We received the call as we were playing footy in the late winter sunshine.
“She is all clear. not a lump anywhere.”
I cried with relief, then asked “what was the ‘lump’ that caused all the worry?”
“Oh – just the tail of her pancreas.”
All of that worry for a vagrant pancreatic tail. I kid you not.
She is absolutely fine. No tumours. No lumps.
We explained to her what all the extra hospital visits and MRIs had been about. Her only question (with an excited smile) – “so I NEVER have to go to hospital again for anything?”
Sorry Kenz – only for all of the other things.
Have you dealt with any curve balls?
Any wayward pancreatic tails?