MARCO's Blog
Age 46
Father of survivor

A DIFFERENT KIND OF LIFE 

Before meeting cancer face to face, I was ill informed – in fact, ignorant let’s be honest – of the material clinical side effects arising as a result of curing this disease. And I’m not talking about those of the “may cause drowsiness” kind: one doesn’t cure cancer with Night Nurse. Once you get up close and personal with cancer, you realise you can never really cure it altogether. What do I mean by that? Well, while the malignancy may be eradicated, this corrosive disease and the after effects caused by the application of treatments needed to achieve complete remission - the promised land of cancer sufferers – often result in significant collateral damage; both physically and emotionally – for the patient and her family. Cancer changes us – of that there is no doubt.  

In Millie’s case the unintended by-products of therapy manifested themselves as a result of the three-pronged approach of the cure she received during seven aggressive months of treatment.  

Chemotherapy – the poison that can make you well  

Chemotherapy is poison. It is the general name given to a group of chemicals that have a specific toxic effect thereby selectively destroying cancerous tissue. In doing so chemo damages other types of tissues and cells and organs. One of the chemotherapeutic agents used in the specific corrosive cocktail tailored to eradicate Millie’s cancer may have damaged her ovaries. I use the first conditional loosely here – the truth is: it probably has – and so Millie faces the very tangible prospect of infertility later in life. And my daughter got away lightly – she could have ended up deaf, and with permanently damaged kidneys. It may, in washing away her tumorous mass, have affected her cognitive abilities in the long-term – but no one can tell with any certainty.  

Brain Surgery – risks of drain bramage? Nah!   

What can be said with a greater degree of confidence, however, is that the complete resection of Millie’s tumour, during her second of three nine-hour long brain operations over the course of four months, probably damaged her hypothalamus. As a result, Millie suffers from Hypothalamic Obesity, a condition that drives her to food and slows her metabolism down (an unfortunate combination leading to sustained weight gain). This affliction may well affect her in other, as yet unidentified, areas of development including aspects of attachment behaviour (the ability to emotionally engage with others), propensity to fatigue and poor body temperature control – amongst others. And I spare you the risks of the operations themselves. They are material, and some bring life well and truly to a full stop.  

Radiation to the brain – the slow death of you  

Radiation can also kill, in a sense, but not as quickly… This treatment can cause collateral damage to the tissues surrounding the location of the tumour. This also applies in the case of brain cancer, why wouldn’t it, when the surrounding matter in question happens – it’s unfortunate - to be grey… Fortunately, Millie benefited from Proton Beam Radiation Therapy, limiting some of the side effects associated with this treatment – but she did not come away without harm altogether.  

Sustained radiation therapy over the course of two months impaired in perpetuity Millie’s ability to think in abstract terms. This is going to make the process of learning much more difficult for her and Millie will require ongoing support, for the rest of her school life and beyond. We all, after all, rely on our working short-term memory – now weakened in my daughter’s case – to navigate the daily travails of ordinary life.  

Millie also now requires daily injections of growth hormone. Protons were the probable culprits in causing this type of chemical deficiency. And in releasing their energy in Millie’s brain, and dying in the process, they probably bequeathed a shortage of a different kind of growth hormones: the ones associated with development. This will also affect her later in life and she will need further support to induce the onset of puberty and help her through her adolescent years.    

I had brain cancer – what’s your excuse?  

The malignant brain tumour itself did not leave without a few parting gifts either. The growth in Millie’s brain caused damage to both her pituitary and hypothalamus. Combined with the various treatments to eradicate this most undesirable of guests, cancer directly contributed to Millie’s hypopituitarism. And so Millie can’t produce some of the vital hormonal substances needed for day to day survival. She needs replacement drugs three times a day. These boost her thyroid function, prevent her diabetes insupidus from making her pass litres of water a day, and finally steroid supplements redress the lack of cortisol her body is no longer able to produce on its own.  

A second chance at life 

As I mentioned at the start of this blog, cancer changes us. It changed Millie – literally, physically, emotionally, physiologically. Did it change her life for the worse? I have asked myself that question many times, in the early hours, when the hardest contemplations often catch us unaware. In truth, I don’t know; maybe it will neither be better nor worse than before. While it may seem that way at the onset, life after cancer isn’t necessarily poorer than the one you might have had without – life after cancer is different. And it’s up to her and us as her family to decide - to define - what that “different” will mean in her life, and who and what she will become as a result. In that sense, the side effects of this brain tumour and its cure are probably not all bad ones. Yes – it’s been hard. Yes, I have experienced unquantifiable sadness at seeing the wretched hardship of cancer affect my daughter in the way that it has. Yes, my slumbering soul aches with intractable grief knowing Millie will face further adversity with every passing resolution of the Earth around the Sun. But past the pain, beyond the suffering, cancer forces us to be true to ourselves, and to others, and in so doing it inalterably recalibrates our compass on what’s really important: our loved ones, and the here and now.  

The last four years have been difficult but at the same time they have been the most profound and meaningful fours years of my life. They have required possession of coping skills I never knew I had, where balancing love and the risk of losing a daughter - knowing that heaven has no visiting hours - is a daily occurrence. Real growth happens when we discover how to remain authentically ourselves in the face of serious illness, of death, of permanent loss. Real growth is recognising when your daughter has been given a second chance at life – in whatever form or shape it will be - and doing your utmost to help her not waste it. Ultimately, I sense this life isn’t something she will eventually succeed at or fail as a result, or because, of her cancer-related shortcomings. No. What matters lies elsewhere, I think. And cancer has helped me find it.   

Summary  

  1. Brain cancer and brain tumours suck – and the consequences of this disease and the cure associated with it will mean that your child will be affected by long-term side effects likely to have a material impact on their quality of life.  
  2. The degree to which a child will be affected will vary however – and can be very different depending on the type of tumour and its location in the brain. With Millie, we tried to identify those areas that were going to need support and focused on them to drive small cumulative improvement over time.    
  3. Compliance, compliance, compliance. Compliance to protocol, compliance to advice given by professionals who have your child’s best interest at heart, compliance with the administration of medication on a daily basis, compliance to daily routines of good eating and exercise. To be compliant was for us one of the single most important element of a successful recovery.    
  4. It takes a long time for the body to recover from the cure associated with brain cancer and brain tumours generally. Be patient. Even now, after three years post end of treatment, I am seeing marked improvements in Millie, both physically and emotionally. Every month is a better month than the one before.  
  5. We tried not to look at Millie’s side effects as limitations according to expectations we had for her (expectations often based on pre-tumour levels). We looked at Millie as an opportunity for improvement according to her potential. Shoot for the moon, as they say, and you might just be lucky enough to land amongst the stars.   

Are you the father of a child with cancer? What was your experience as you came face to face with this disease? Please get in touch no matter what stage you are at. I would love to hear from you, to understand first hand how you are dealing with the many challenges we, as parents, face in the context of paediatric brain tumours – both benign and malignant. [email protected]