Naomi Cook is Mum to Brain Cancer Survivor, six year old Hana. She is a Registered Nurse, Health Activist, Children’s Author (…in the making) and she blogs as Nurse Naomi.
‘You can’t say that!’ My husband says, aghast. ‘It’s too...’ He fumbles for the word, ‘…harsh!’
‘But it’s the truth.’ I say quietly. Saved…but maimed. There is often a great cost to being one of the lucky ones, a price to pay for surviving paediatric brain cancer.
Perhaps I could use the word ‘collateral damage,’ or ‘fallout,’ he suggests, then he starts to list synonyms to ‘maim,’ ‘injure, disable’ and so on, all of them less ‘harsh’. I nod then I shrug. I’ve used these words before but they don’t encompass the living experience, the so very harsh reality of life after brain cancer and it is this that I want share with you today. I will not ‘pretty’ it up nor try to make it easier to read.
"I want to tell you the truth."
We are living this ‘harsh’ reality. I see it, feel it, drink it, eat it, sleep it and wake up to it everyday. My little girl, Hana, aged 6, was diagnosed earlier this year with a tennis ball sized Craniopharyngioma. She is a survivor and not a day goes by that I don’t breathe in her blissful smell, aching with gratitude that she is still here with me. I would have bartered with the devil himself for her life that night, that dark, dark night I knew before anyone else did…watching the lights of Bondi twinkling below me, tears streaming rivulets down my face.
My daughter is a survivor but there has been a cost for her survival; it hasn’t come for free.
You see, when a cancer occurs in the head, removing it isn’t as simple as removing a tumour from a kidney or breast. At least right now it isn’t, with the current techniques and equipment available to the talented men and women that are brave enough to undertake this task. The place wherein the personhood lies needs to be invaded and scraped clean. Some ‘collateral damage’ is inevitable, unavoidable but collateral damage – in this sacred space - is comparable to the removal of no other cancer, no other tumour.
"I was wishing I could kiss the tumour out of her head. That my love could be enough to obliterate it."
Brain Cancer is Different. And Invisible.
This is what sets brain cancer apart from the other cancers – such an important distinction to make and ludicrous when you take into consideration the stingy budget put aside for brain cancer research. Why is this? Is it because most children who get brain cancer die from it, meaning there is no one left to stand up and make a noise about ‘research’? Is it because in the cases where a child does survive, their parents are living the harsh reality that is my existence – neck deep in adjusting to the new world of loving and raising a brain injured child?
The Price My Daughter is Paying
Will she wake up the same? I thought, on my own Gethsemane, the night before her surgery. Will she survive – and will she wake up the same?
The answer is no, she didn’t. She is still my beautiful, darling angel, she is still my Hana. But she is also different. How can you wake up from deep, invasive, extensive brain surgery the ‘same’?
On the surface my strong, warrior little girl takes her new life in her stride. She barely seems to notice the barrage of medications that she needs – to keep her alive – the emergency injection in my handbag. Then there are the injections that sting her belly and thighs every night. Pills. Pills. Pills and a lot of pain. Pain that drives her into a wheelchair after taking only a few steps outside, her ankles and knees are excruciating. She hobbles around the house by evening time, gasping and groaning with every step.
She weeps openly, frequently, the world seems so much more unpredictable and beyond her control now. Her short term memory loss throwing her into the unknown a hundred times a day; ‘I don’t remember,’ she says looking to me for the answer, her independence sabotaged – she can’t trust her own brain to tell her the truth anymore. Her loud, body-racking sobs echo through our house – even the blank, white walls must be rocked by her distress. My youngest daughter watches, listens and curls into a ball, wondering where her big sister has gone.
“Food! FOOD! I want food!” Her waking moments are dominated by thoughts of food. She would scream and hit in frustration. That wasn’t my Hana, my beautiful, suffering little girl. The violence has abated but anxious questions about the next snack, the next meal, countdowns to meals form the backbone of our day. We live our lives counting her down to when she can eat. Her life, our lives - revolve around food.
And her body, broken by part of her broken brain, is hard wired to obesity in-spite of careful dietary intervention and a daily exercise regime. Over the weeks she has stacked on kilo upon kilo of weight and it isn’t abating. Hypothalamically Obese now, morbidly so, she struggles to move her new, heavy body about. ‘When can I learn to do a handstand mummy?’ She asks me and my eyes fill with tears.
"Yes, I chose the word maimed for a reason."
There is so much beauty in seeing another day rise with her, still with us, in our lives, and so much gratitude – although it is with an element of fear that I let that gratitude wash over me every night as I bend and kiss her angel cheeks.
There is so much pain in seeing my survivor’s new life spin itself out in front of me, her suffering beyond my control. My mission – to heal her – in any way I can – burns like a raging fire inside me. Like food obsesses her thoughts, healing her consumes mine.
Surviving and Thriving
My daughter will thrive and so will the survivors of other parents like me who will spend their lives ensuring it with a steely determination and an undying love.
But one thing is clear; improved surgical techniques, newly developed therapies; all these increase treatment options and this will increase the number of brave children that are lucky enough make it as a survivor. Improving treatment for paediatric brain cancer necessarily means less collateral damage. Less collateral damage means a better quality of life for these survivors. But scientific advancement doesn’t happen alone, these developments and their much-needed funds don’t happen by themselves, they need to be called for, pushed for, fought for – as if they were a luxury, not a necessity.
It doesn’t always happen to ‘other people.’
Brain cancer is unpredictable in whose children it chooses. Brain cancer? A year ago brain cancer didn’t concern me at all. The concept then frighteningly foreign, the stuff nightmares are made of, nothing that I would ever have to worry about. Of course then, fighting for funding for brain cancer research simply wasn’t on my agenda, well, it’s the kind of thing that only happens to other people, right?
But it’s not. It affected me, my little girl, and it kills more children in Australia than any other disease, so don’t you think it’s time we all tried to do something about it?
Don't let kids fight brain cancer aloneJdonate
You can follow Naomi and Hana’s Journey on Nurse Naomi and on Facebook Naomi Cook Writer/Author. Naomi tweets as @NaomiRCook