Hannah's Blog

Aunt of Survivor

Together, we can build a rainbow...

I have a six-year old niece. She is funny, intelligent, kind, musical, thoughtful and full of fun. She is also living with a brain tumour diagnosis: Emily was diagnosed with a craniopharyngioma when she was four. I hesitate to describe this bubbly little girl as a ‘survivor’, as that, to me, implies a battle fought and won, a victory gained; with her type of tumour, this notion of a finished battle could not be further from our experience. Whilst this tumour is classified as low grade, it is sometimes described as ‘malignant by location’: although it is slow-growing, it is located deep within the brain (it develops from the pituitary gland), very close to fundamental structures, and therefore any growth of the tumour or accompanying cyst can have significant effects as it compresses vital areas of the brain, and so also can the treatments used to suppress the tumour. Shortly after diagnosis, Emily had various operations to decompress the tumour and insert a shunt. She then went on to undergo a course of proton radiotherapy in Florida. To all extents and purposes, her brain tumour treatment was then finished. The quarterly brain MRI scans are now clear: a battle fought and won, surely?

But that is not the full truth, it is certainly not her history as she or her parents would tell it.  That the various aggressive tumour treatments were successful, and the tumour is no longer visible on scans is, of course, a cause for celebration, and we are grateful everyday for the skills of those who have got her to this stage. But is the ‘battle’ over? Far from it. Life is changed forever for Emily – and for her parents.  Emily will forever be dependent on medications for survival, and she has now a number of medical conditions that leave her vulnerable to catastrophic life events. She will face a number of additional challenges in her life ahead, and will always depend on medical input, monitoring, and assistance, if she is to be all that she can. Her life will forever bear the marks of her tumour and of her treatments, but the struggle will always be to stay clear of any further active hostile engagement; this is now a Cold War, if we are to stick to the earlier analogies.

However, although Emily doesn’t know it yet, just as her brain MRI scans will forever bear the scars of the eventful journey she has made to this point, so her parents are also scarred deep inside by the primal fear that comes with seeing your own child become so very, very sick. What parent – indeed, what compassionate adult? – has not longed to take the pain and suffering from their child in exchange for their own good health? Gone are the days when a parent can simply ‘kiss it better’, and with that is lost that unquestioning childhood certainty in the infallible protective power of the parent, a loss a parent may feel as keenly as the child. Parents may find themselves frantic with questions, guilt and doubt: could I have prevented this? Is this something I did? Why didn’t I notice sooner? Have I made the right choices for my child? Her parents and close relations will never be as they were before, but they must learn to accept these scars as part of what has got them where they are today: the history informs the future, but it cannot define it. Emily and her medical team have worked so hard to give her the best possible future, but it is her close family who must ensure that she is best placed to take it, and to make of it what she can. They must move on with Emily, their own war wounds forgotten as they face each new day as endlessly reinvigorated as a child, a huge demand indeed for those who are likely to be tired and frightened by the whirlwind of diagnosis and treatment. Life is now about adapting to this new ‘post-tumour’ normality, and about accepting and incorporating life as it is now, as rich with its challenges as it is with its opportunities.

So how can I, as an aunt, best support Emily and her family? What is my role in this journey? The position of aunt is a peculiar one, slightly removed from that inner circle of parents, partners and grandparents, and yet as invested and frightened as any of those. I find strangers look at me with kind compassion when they hear of a niece’s brain tumour diagnosis, as though I, too, am somehow ‘special’,  worthy of their support and sympathy, and yet I am acutely aware that I am not the one who spends wakeful nights on a hospital put-up beside my sleeping child; I am not the one who sits up late into the night debating the pros and cons of every possible treatment decision. I am outside that, and I do not for one second envy her parents who are wracked with these choices. All I can do is silently wait, distracting myself with endless anonymous research and wishing (praying, if you will) for wisdom and courage to guide those who must make these life-changing decisions. My role is to support those who support Emily, always accepting that each and every decision will have been made with the greatest of consideration and with Emily’s wellbeing absolutely at the heart. Sometimes it is true that I have longed to ask blunt and forthright questions – my own approach in tough times has always been to try and work back from the worst case scenario – but I have tried hard to offer support unquestioningly, accepting that I will be told what they want me to know if I am to best support them all in the days ahead. Her parents have been absolutely inspirational in the positive and proactive approach they have taken to Emily’s diagnosis and treatment, so I have felt it incumbent to follow their lead. We look forwards with optimism and strength: knowledge is power, and together, we are far more than the sum of our parts. If I can assist in even the smallest way in this great journey that is our life with Emily, then I will be proud of whatever I have done for a truly inspirational little girl, and her totally dedicated family.

But what of Emily, and my position as her aunt? I could weep for the child who – still – endures almost unimaginable surgeries and painful tests, but that won’t help anybody, least of all Emily. The approach I have chosen, rightly or wrongly, is to accept that this altered reality is now her life, and it is a life that I know that she will live brilliantly. I choose to turn a blind eye (forgive the bad pun…) to her weaknesses and disabilities: they are part of who she is now, and our role, as her family, is to enable her to be the best that she can be, overcoming limitations where possible, and accepting and accommodating others. She has her weaknesses, but we all do, and we must seek to normalise these for her; we laugh together at her clumsiness as I take her muddy and scabbed hand when she trips on the uneven park pathway, before she speeds away again on her shooter, as I encourage her to go faster and faster. I would take away this pain that my entire family has faced in a heartbeat, but I would not for one second change a thing of the cohesive and awe-inspiring unit they have become, their attentions always focused on one little girl, Emily: as perfect now as she was when she was born.