Meeting a parent and their child

In February 2000, I stepped off a train at Glasgow and was greeted warmly by Stephen (and his mum Irene), the first child with pituitary disease and his parent, I had ever met.

I’ve had pituitary disease for many years, and coincidentally suffer from most of the hormone problems that Stephen has, called hypopituitarism, meaning basically that our pituitary glands don’t function and we take replacement hormones. We’ve both had craniotomies (brain surgery) and Stephen has had two of these operations, plus radiotherapy.

With these comparable factors in mind, I imagined a young boy who would have similar daily quests and somewhat minor problems as I had, but that I had come to accept readily, due to feeling better on my hormone replacements, and the sheer necessity of ‘getting on with it’. I could not imagine at that time, what his and other parent’s journeys could possibly be like.

I remember clearly Stephen’s lovely twinkly smile, and a great big, warm hug. He seemed to be saying in that hug – “here is someone like me”. This 8 year old boy had just turned my thoughts upside down – I didn’t have the experience with pituitary children and their families, to begin to conceive of just how difficult this disease could be.

Stephen hobbled painfully slowly towards the car, across the station car park. His joints ached and he’d gained weight from steroids and his inability to control his appetite – due to hypothalamic damage. He had great difficulty in manoeuvring himself into the rear seat, and hurt himself as he tried. He cried tears of pain and frustration; this was so upsetting. His mum Irene calmed him and we set off to their home.

I spent the next two days with Stephen and his family. I also met other children with pituitary disease (particularly Craniopharyngioma, as Stephen suffered) and the similarities were common amongst these young people. From my adult viewpoint I simply took hormones each day, swallowed tablets, snorted up my Desmopressin in a nostril (to control my DI) plus injected myself each night with growth hormone. It was a positive experience to actually take my hormones around the same time of day as Stephen, so that we could be the ‘same’. But as I joined him in his medication rituals, I began to see the sheer hard work, and sometimes dread, of a mother trying to get an 8 year old to swallow/inject chemicals –often awful tasting, if they weren’t swallowed fast - on a daily basis, over a number of years. Combined with this, Stephen was having nightmares, difficulties with thirst/fluid control and was vomiting regularly. So, up came the last dose of essential cortisol – how much had he digested?

He couldn’t just say ‘Bye Mum, I’m off out to play’. He didn’t have the energy, or good mobility and the frustrating mood swings he suffered limited his relationships with other children. A child must feel exasperated and doesn’t have the maturity of course to understand or cope with these horrible ‘hormonal flashes of altered mood. How his mother coped with this I couldn’t imagine; but she did, with much love and patience.

My experience of being with Stephen taught me that pituitary disease should never touch children – I know that in an ideal world any child should never suffer any disease or impairment - not only pituitary. In the pituitary world, blood tests, clinic appointments, claustrophobic MRI scans, constant medication is the norm – for life. Adults look upon this as a chore to be got through as quickly as possible, but what do the children and their parents think, or go through?

I came to appreciate how his mum faced each problem and worked around, or through it, motivating and supporting her son. She and the family have faced, and will continue to face many more challenges.

Stephen helped me understand what the word ‘brave’ really means and his family were a great example of loving and caring, in an often tiring, frustrating and difficult situation.