Her daughter said with complete confidence: "I know. You will heal me."

By NAOMI COOK

‘I know!’ My beautiful little girl tosses her hair with such certainty, ‘You will heal me.’

Nearly six months have passed since my six year old daughter, Hana, had a giant brain tumour removed. I promised her that I’d find a way to heal her brain and take away the constant hunger and debilitating weight gain she suffers as a result of her enormous surgery. On my journey to do so, I stumbled across something that not only has the capacity to improve her quality of life, but could also the improve quality of life of thousands of others with brain cancers. This is what happened:

The last time I wrote here for you all, Hana was experiencing the onset of Hypothalamic Obesity, an intractable obesity that occurs due to brain damage and one that contemporary medicine has no cure for. My daughter’s body is one I can hardly recognise, by touch at least. Even her hands feel different to hold. The weight gain so is tremendous simply getting up from sitting down is tiring for her. Her ankles have given up, painful and inflamed, she uses a wheelchair to move around outside when she wants to remain pain-free. She is haunted by an appetite so strong that food rarely leaves her thoughts. Yet with a disciplined grace and elegance she feeds herself tiny fairy-sized snacks and eats her meals with the manners of a delicate princess while the wolfish hunger rages inside her.

Sometimes the hunger is too much to bear. Even though she tries to keep herself busy that rabid hunger, incessant like a dirty fly, pests her to the point of weeping.

‘I wish I wasn’t hungry all the time. I wish I didn’t have a Brain Tumour.’

The days the numbers on the scales go up are dark. I close my eyes before I look down past her growing belly, savouring the last moments of ignorance. Then I steel myself, look at them, my mouth twisted and the air I suck in tastes rancid. I sigh it out as I leave the bathroom an iron fist clutching my stomach as the malicious scales hum behind me.

Will the weight gain ever stop?  What is this beastly condition going to do with her?

The months have been filled not with a search for a cure, but a hunt. My hunt has been primal, my desire to destroy the condition that afflicts my child almost feels feline. Like a predator I want to stalk it down and savagely ravage this hunger that has infested her, rid her of this exhausting weight that drowns her.

But there is more to my daughter’s poor health than Hypothalamic Obesity. She suffers from low mood, poor energy levels, is less loving than she used to be and she has a reduced desire to socialise or play – most notably with her sister. She prefers to sit alone and colour, obsessively sorting out her pens into colour coded groups, counting them out every evening. I was patient with this, thinking this new behaviour was a result of her traumatic illness and that it’d pass in time – I was wrong.

A Cure?

One Sunday afternoon, lazily scrolling through Facebook, I stumbled across a link posted by another Craniopharyngioma survivor who I have to thank for everything that follows; It was an article about the hormone ‘Oxytocin’. This dubbed ‘miracle hormone’, had been used to reduce weight and appetite in obese mice. Not only that, the article also outlined the brilliance of this ‘feel good,’ or ‘love’ hormone in a handful of other ways including, it’s ability to both improve social interaction and relieve anxiety. This uses of this hormone weren’t a ‘new’ discovery, nor was it an unknown and untested drug; it had been safely and successfully studied both in adults and kids for a myriad of other disorders including depression, autism and anorexia nervosa.

A chord struck within me; Hana can’t produce Oxytocin from her Pituitary Gland anymore, her Brain is ‘broken’ there after her tumour and she takes medication to replace her missing hormones in order to stay alive. But, right at that moment, her so called complete hormone replacement therapy appeared to be glaring incomplete! Not once, not ever, did anyone suggest that she take Oxytocin to replace a hormone that her body needs, but no longer produces!

Within minutes I was dancing around the house, running from room to room, ranting and raving like a lunatic. This was it! This was my breakthrough! This had to be one of the missing links! And it seemed SO obvious that Oxytocin should be part of my daughter’s daily medication regime that I couldn’t quite believe that no one had thought of this before. No one, in the whole wide world, had considered prescribing Oxytocin as a standard hormone replacement in people- brain tumour survivors – who don’t produce it anymore. Yet, one thing that HAD been thought of and studied before, is the ensuing poor quality of life in both adults and children after a Craniopharyngioma brain tumour! Why had no one postulated that insufficient hormone replacement could be one of the potential causes of this poor existence, this ‘half-life,’ of these brave survivors?

I will not let my daughter live a ‘half-life.’ If Oxytocin was proven to be so beneficial for the human body – and yet pretty much absent in hers, I decided that I would get it for her, I would trial it on her. Apart from it’s traditional uses in labouring and breastfeeding mums with this tumour, medicine and science hadn’t yet ‘decreed’ it necessary, or even yet ‘decreed’ it as an optional life enhancing treatment modality for this population of people. And I had no intention of waiting around for them to do so. I decided on my mission that Sunday afternoon and I resolutely decided I wouldn’t let anyone -Doctors included – stop me.

My Daughter is the First Brain Tumour Survivor Worldwide to use Oxytocin for Extreme Hunger, Obesity and Poor Quality of Life…

Now that I’d decided that I would defy convention to help Hana, I had to find someone who was willing to defy convention with me. I needed an open minded doctor, someone who was willing to think outside of the box with me. Fate worked in my favour and the very next day my local compounding pharmacist gave me the name of a GP who, although wasn’t prescribing Oxytocin for children or Brain Tumour survivors, prescribed it regularly for adults for other reasons; Dr John Hart, in Sydney. I’d been mentally preparing myself to hop on a flight and to travel the world to get hold of Oxytocin yet this doctor’s clinic was only a few kilometres from my house! It was meant to be.

Then I published a ‘Mother’s Plea’ on Nurse Naomi, begging someone in the International Scientific Community, somewhere, consider conducting a study on the therapeutic benefits of Oxytocin for Brain tumour survivors. I want science and medicine to ‘move on’ from this stagnated practice of partial hormone replacement therapy that results in such poor quality of life.  Within three days the blog post had over 1000 shares and my Facebook Page had been seen by over 20,000 people. Please consider sharing it on your Facebook if you can. The more people that read it, the higher the chances it will hit the feed or inbox of someone who will help beautiful adults and children like my daughter, not to mention brighten the futures of so many who will one day be diagnosed with this terrible brain tumour.

My blog and Facebook inbox became alive with people all over the world reaching out – it has been mind blowing to ‘meet’ all these amazing people, all on their own current and post-Brain Tumour journeys. Many were desperate to improve their quality of life or to improve the quality of life of their loved ones. So many yearned for something to reduce their appetites, curb intractable weight gain and many also admitted they lacked ‘warm feelings’ and suffered from reduced social interaction since their surgeries. It was like a light bulb went on in the worldwide Brain Cancer community! I prepared blog posts with hyperlinks to Oxytocin studies that readers sent to the offices of their Doctors in an attempt to prep them for the ‘Oxytocin’ talk they were now so fired up to have. Then, nervous, conscious of this new, large audience, we let Hana began the Oxytocin trial, I made detailed notes of her response and shared them online.

My Daughter Transformed!

The first day Hana had Oxytocin was the pretty much the first day since her surgery that she wanted to swim. Getting or cajoling her in the pool everyday for active play has been depressing and reminder that she is still so ‘far’ from her old self. That day she not only jumped in of her own accord but then actually proceeded to swim laps, ploughing up and down the pool. Wow. Although Oxytocin doesn’t directly impact on energy levels, it elevated her mood so much that her energy levels were consequently affected. She was happy and motivation to ‘move’ was the result of this happiness.

Then, that evening my husband and I were flabbergasted by the sudden demonstration of love and affection between Hana and her younger sister. My youngest daughter has suffered from Hana’s cold and uncaring way of communicating with her since the tumour was removed. Yet on that first day of Oxytocin not only were the girls actively playing together (this had only happened once or twice in five months) but they were hugging each other and saying they loved each other. The second day of Oxytocin treatment Hana stopped ‘sorting out’ her pens into obsessively colour-coded groups, for the first time in months she felt ‘able’ to let go of her evening pen counting routine.

It is too early to say whether Hana’s appetite and weight will be reduced by the Oxytocin as it has occurred in the mouse and one human study (the subjects were obese but not Hypothalamically Obese, by the way). One drawback for us is that the Oxytocin stimulated a strong sense of thirst, compelling Hana to drink which due to her other health conditions was not a positive effect as she became water retentive. We temporarily stopped the Oxytocin, allowed the water retention to dissipate and are re-trialling with a lower dose. We will keep trying until we find a dose and frequency that works for her.

I Will Heal You…

I promised my daughter that I would find a way to take away her hunger, to heal her.

One thing I’ve discovered on my journey to do this is that she needs replacement Oxytocin. We know now that the ongoing quality of her life will be transformed with it regardless of the impact it has on her weight and appetite. And if I find her hunger and obesity aren’t later obliterated by this hormone? Well, my hunt will continue of course, but with an even greater ferocity than before; I am not just overjoyed that Oxytocin makes her feel better but I am empowered by the actions I’ve taken to improve my daughters life. I have proven I do have the power to help her, to change her and I believe I am one step closer to healing her.

Naomi Cook aka Nurse Naomi is a Registered Nurse, freelance writer and children’s author in the making. Check out her blog (www.nursenaomi.wordpress.com), 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.