She used to see things from a nurse's perspective. Now she has to nurse her own, very sick little girl.

By NAOMI COOK

Last year I started blogging about health and wellness as Nurse Naomi, but at the end of 2013 I had no idea that in the New Year I wouldn’t be blogging about health from a nurse’s perspective but as a mother, nursing her own, very sick little girl. The turning of the tides is a raw, humbling experience and one I am compelled to share. Here is our story.

‘It’s a Tumour.’

I swear it’s a day I’ll never forget, yet only nine weeks later it’s already fuzzy around the edges, courtesy of a dark haze that started its descent on me the night before my daughter was diagnosed. I’d sat on the floor of the lounge, slumped against the French windows, crying for two hours in the dark, alone. Dread settling over me, a mother’s sixth sense giving me a twelve hour warning.

The next morning I’d rushed my five year old daughter into the car and driven to the hospital for a CT scan, knowing full well what the scan would show. My little girl, Hana, wholly ignorant as to what was unfolding, played with the toy CT machine, giving her penguin a brain scan. My stomach was twisting so cruelly I’d had to sit down, palms sweaty, a fine tremor running through my fingers as I tried to swipe the screen on my iPhone. I was freezing cold even though it was a hot summer’s day. This is it, I was thinking, seconds from now they are going to walk in and tell me that my daughter has a brain tumour. And soon enough they did. A very nice doctor slipped into the room with us and politely told me there was a large mass in her brain, a craniopharyngioma. I nodded, my world now officially uprooted and spinning madly around me.

Surviving Brain Surgery

Surviving those early days was easier than you’d imagine. Shock makes everything unreal, and you can watch your days unfold almost as if you are a spectator, ever so slightly removed from the brutal reality. But shock doesn’t completely dispel the fear. The blindingly white fear that unfurled it’s fingers in those early days and had its way with me the night before her surgery. Will she wake up the same? Will she wake up blind? Will she survive? All the terrifying ‘what ifs’ and I imagined a world without her completely devoid of colour, and me, forever broken within it.

Two weeks of Intensive Care followed; endlessly beeping machines, lines of fluid and medications, rapid heartbeats, screaming, fits of rage, rabid hunger and cloudy days coloured by my daughter’s vivid hallucinations. She was delirious for a full ten days after her surgery. Quite frequently she reminded me of patients I’d nursed with dementia and I wondered whether she’d ever be ‘my daughter’ again.

A Damaged Brain and a New Body

Now we are home and living with our ‘new’ little girl. With part of her brain removed her body has changed. She is dependent on a delicate balance of medications to keep it functioning, to keep it alive. Her colour is different, a variety of shades in the circles under her eyes tell me how she is faring from one hour to the next.  A cocktail of drugs line my kitchen counter that I crush and spoon-feed into her mouth, open like a little birds, three times a day.

Her short-term memory has improved dramatically but is still deficit, we’re still not sure if it’ll ever fully recover. The consuming, terrible, constant hunger, hyperphagia – a side effect of the damage caused by the tumour and its radical surgery – is more under control, although thoughts of food still preoccupy much of her waking moments. ‘I hate being hungry all the time. I hate having a brain tumour,’ she said this over and over again one evening as she drew large angry scribbles over a piece of paper. ‘Why did the tumour choose ME?’ she later sobbed in my arms.

Her rapidly increasing body weight is one of the saddest things to witness, far worse than any of her other conditions. My beautiful little girl is at a high risk of developing morbid obesity, or ‘hypothalamic obesity’ over the next few weeks as are many children after this type of tumour. It is a type of obesity that is resistant to diet and lifestyle intervention and so far medical research has found no cure. We have began a war against this enormous weight gain and we are scouring the world for ways we can slow it down. Or cure it. Her life was saved from certain death from the tumour, we are not going to sit back and let watch develop life threatening obesity.

Counting Blessings

Many people ask how I am coping with this enormous change to her life, my life and the life of our family. Of course I have my moments, screaming into a pillow or at the speechless white wall in my bedroom…the first time I’ve ever properly ‘screamed’ about anything. It doesn’t get much more raw than that. But most of time I try and remain strong. Being positive and focusing on our fortune has been key, for me at least. I clearly remember leaving the Operating Suite soon after Hana had been put to sleep before her brain surgery. At that point we had no idea how the surgery would go, whether the surgeon would be able to remove the tumour and how much brain damage would occur but I remember looking my husband in the eye and whispering fiercely to him, ‘There are many others who are worse off than we are.” I am grateful for what we’ve got. So long as she is here with us and I can hold her in my arms, we can deal with the fallout and work with the havoc that this tumour has wreaked upon us.

Today…

There are new ‘firsts’ everyday. Sunday, Hana did a puzzle for the first time since her surgery and today for the first time in three months, she played ‘mums and babies’ with her little sister.  We take giant leaps forwards but also sometimes step backwards each week. Only two days ago we had an ambulance ride to the hospital as Hana developed cerebral oedema as a very rare reaction to her new nightly Growth Hormone injections.

I’m not sure that the immediate future holds but I know it must be better than what we’ve just been through. Having that belief, keeping a firm hold of that hope, is all I need to be able to get up in the morning, ready to deal with whatever the day will throw at us.

Naomi Cook aka Nurse Naomi is a registered nurse, freelance writer and children’s author in the making. Check out her blog, or Naomi Cook Writer/Author Facebook page for updates on her daughter’s journey to recovery and her war against Hypothalamic Obesity. She tweets as @NaomiRCook.