My brutal lesson on the concept of perspective
GUARDIAN and Herald editor Richard Firth's two-year-old daughter Isla was diagnosed with a rare form of childhood cancer last month. Here he recounts what happened.
On Tuesday, October 2 I was sitting in a hotel room in Preston contemplating my evening meal.
I was on a course looking at newspaper website development and we had some homework to do. As I was preparing for a robust evening in the bar, my phone rang. It was my wife, 75 miles away in Normanton, with a piece of news that would tear my heart open.
My baby daughter, Isla, had cancer.
We'd first spotted something in one of her eyes about a month earlier. It's difficult to describe what it looked like – sort of like a cat's eye in the road, reflecting light back at you rather than absorbing it into the pupil. What it was was a tumour called retinoblastoma, a rare childhood cancer. We didn't know that on the Tuesday evening. My wife Julie had taken Isla to the GP that afternoon and had texted me to say everything was all right. The GP wasn't too sure what was wrong but was going to make Isla an appointment with an eye specialist in Wakefield 'in a couple of weeks'.
When Julie rang me in the evening, things had taken a horrible turn for the worse. The GP, bemused by our child's eye, had spoken to a consultant who demanded to see Isla the very next day. Julie asked the doctor why this was so urgent. "It could be a growth", said the GP. "A growth?", asked my wife. "Do you mean cancer?". "Yes, cancer."
I remember nothing about the drive back home that night. Having fought back tears all the way home, the floodgates opened when I opened the door and saw my little Isla, dancing in front of the telly, completely unaware of what Julie and I had just been told.
Fighting just to keep some level of composure, we managed to get her to bed before totally breaking down, both of us convinced – but not actually saying the words – that cancer inevitably equals death. We phoned the people we had to – bosses, parents, friends – and went to bed. I actually slept quite well that night, I don't think any of it had even started to sink in.
Our appointment that next day was at Clayton Hospital in Wakefield. Isla had eye drops put in which made her pupils huge and then she was examined by the doctor. He then used the word 'retinoblastoma' for the first time, but again, he couldn't be sure.
The next day we went to St James' Hospital in Leeds where we saw a specialist. He told us that, yes, Isla had cancer, retinoblastoma to be exact, and that the worst case scenario would be that she may lose her eye. He explained, in a manner that instantly made Julie and I feel a bit better, that this form of cancer is usually contained within the eye and does not spread – treat the tumour and the job's finished. His quote was: "If there's a cancer to get it's this one." That looks a bit ridiculous on paper but it did actually have a big soothing effect on both of us.
On then to Birmingham Children's Hospital, still less than a week after the GP first took a look at little Isla. We had to be at the hospital for 7.30am and we stayed at the nearby Thistle Hotel, all paid for by the NHS.
Isla was put into a smock and a play specialist was assigned to her to help take her mind off the strange surroundings. Then it was time. I carried Isla down to the room where she was going to be put to sleep.The purpose of this visit was for the doctors to have a good look in both Isla's eyes and ascertain the extent of the tumour. They were already fairly sure there was no problem with Isla's left eye (retinoblastoma often occurs in both eyes) but they needed to be sure.
The anaesthetic was the worst part of the day. From the bright cheerful ward full of bright cheerful nurses, we had stepped into a thoroughly clinical environment with machines and countless staff wearing bright green tunics and masks. For the first time in all of this, I could see fear in Isla's face.
They knocked her out by way of a mask, her expression of panic and fear replaced by a calm, tear-soaked serenity. Julie and I left the room and our baby girl. This was the darkest moment of my entire life.
We went for a walk round and, around an hour later, we were called back to get her. She awoke quickly and, rather than keeping us waiting, we were taken to meet the surgeon, the nurse and the oncology specialist pretty much straight away.
The surgeon told us that the tumour had detached Isla's retina. As a result, she'd not seen anything out of her right eye for quite a while. We were stunned. Isla's just a normal little girl, there was nothing at all in her behaviour to suggest that she couldn't see out of one eye. I suppose I thought people with one eye bumped into things and had no kind of depth perception. In truth, I'd never really thought about what life would be like with only one eye.
The size of the tumour meant that we were to learn another new word that day – enucleation – the removal of the eye, the only sensible course of treatment for Isla. She couldn't see out of the eye so she wasn't going to miss it and the tumour could not be frozen off or shrunk with chemotherapy. The eye had to come out.
They carefully explained what would happen next. We were to go back to Birmingham in a week when the eye would be taken out. The eye, the tumour and part of the optic nerve would then be sent off for careful examination. The risk with retinoblastoma is that the tumour can reach the part of the eye which contains blood vessels. If it does that, it could spread to other parts of the body and things get a lot more complicated. Even if it looks as though the tumour has tried to spread, they give children chemotherapy, just to be on the safe side. The oncologist told us that a third of all children who have an eye removed because of retinoblastoma then go on to have chemo.
We did our best to take all this information in, but it was difficult.
The specialist retinoblastoma nurse then took us off to a playroom where she explained what would happen with Isla's artificial eye.It was a surreal experience, flicking through a box of false eye shells, one of which would soon be an integral part of my daughter's face, when not a week earlier I had been sat in a room discussing internet trends without a care in the world.
We came home and the next week went by in a blur. The in-laws were staying which made life a great deal easier and there was a moving reaction from friends and family who all made the effort to contact us and send flowers and gifts. Every message touched us and we were able to draw comfort from the knowledge that people were thinking about us.
We drove down to Birmingham again on the Sunday night. The next day we were on the ward quickly, Isla was smocked up and the play specialist again came to spend time with her. She was taken down for surgery and Julie and I spent an hour in a nearby betting shop picking out losing greyhounds with dogged consistency (the one horse we backed, Eye Catching, came nowhere in the 3.30 at Windsor).
Before we knew it, Isla was back on the ward with us and awake. She was very dozy for the rest of the day but the surgeon told us that everything had gone very well.
Isla slept most of the day and all night while Julie and I slept next to her. The next morning Isla tried eating but was sick. We had been told to expect her to still be in hospital on the Wednesday but her miraculous powers of strength returned and, as Tuesday progressed, she started eating, talking, playing and dancing. By 5pm Tuesday, we were out.
We stayed in the hotel that night, shattered but relieved.
For the next few days we waited to hear if Isla would need debilitating chemotherapy. Despite the major surgery, Isla was her normal self. She had antibiotics and a few painkillers but the pain subsided within a couple of days.
The threat of chemotherapy hovered over us all, with neither Julie nor I sleeping much – we just wanted to know what was going to happen next. And then the call came – she was in the clear, the tumour hadn't got through to the dangerous part of the eye and there was no need for chemo.
Isla has appointments in Birmingham and at the artificial eye clinic in Hunslet but the worst of it is hopefully behind us.
For most of the period described above I think I was in shock, a state of mind which makes you oblivious to the mundanities of life, concepts like passage of time and routine. The dangerous thing to think was 'why us?'. We saw many children in worse states than Isla in our numerous hospital visits, families with more to cope with than us, children bearing their illnesses with such grace and dignity. Thinking we have been singled out for punishment in some way is natural but counter-productive.
The thing to cling onto is – she's cured, she's home and she's just like she was before. We're lucky to have a child to love, nurture and protect and I will never take that for granted again.
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Sunday 27 May 2012
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