Had a wonderful day today. Celebrated Isla’s second birthday with a garden party for our close friends and their children. The sun shone all day and Isla was like a little whirlwind, charming everyone as usual.

October 2, 2007

My world’s collapsed. Isla was referred to a consultant following a trip to our GP about a weird ‘cat’s eye’-type reflection in her right pupil. We were told the problem could be a growth.

“Do you mean cancer?” I asked, confident I’d be reassured otherwise.

“Yes,” was the reply. I felt like my heart had been ripped out. The tears flowed as I struggled to take it all in. My husband Rich and I spent the evening sobbing in each other’s arms. My mind won’t stop racing with terrible thoughts of losing our beautiful daughter.

October 4, 2007

Haven’t slept for two nights. I’m seven months pregnant and I need rest for the baby’s sake, but I’m scared to close my eyes and be alone with my thoughts. We saw the specialist at St James’s University Hospital in Leeds today. We were desperately hoping for good news, but things went from bad to worse.

It’s definitely a cancerous tumour. Isla behaved so well while she was examined – we told her the doctors wanted to look at fairies behind her eyes. She’s been referred to Birmingham Children’s Hospital (BCH) for more tests. This cancer, called retinoblastoma, is so rare, only 40 to 50 children a year are diagnosed with it in the UK.

We’ve been told the worst-case scenario is that she’ll lose an eye. If someone had told me that a week ago I’d have been devastated, but now it’s strangely comforting because it’s unlikely she’s going to die. An eye seems a small price to pay.

October 5, 2007

I’m in a trance and feel like I’m living someone else’s life, but I’m learning to fight back the tears for Isla’s sake. My precious little girl has cancer. Amazingly, she seems fairly oblivious to it all, charging around, hardly stopping for breath. I don’t think she’s aware of anything going on yet.

Rich and I are trying our best to put on a brave face, grateful that she’s too young to realise what’s happening.

October 8, 2007

First visit to BCH today. We tried to stay upbeat and told Isla the doctors wanted to see the fairies again, but watching her being anaesthetised so they could examine the tumour was heartbreaking. Isla was clutching me while they put the mask over her face.

She was screaming, so confused and terrified, wondering why I wouldn’t help her. Rich and I both left the room in tears.

It wasn’t good news.

The tumour has grown so big, it’s detached Isla’s retina and she’s been blind in her right eye for some time. How could we not have noticed? What sort of parents are we? We were told the best treatment is to remove her eye and hopefully all of the tumour at the same time.

She might need chemotherapy if the cancer’s spread, which is our worst fear. If it’s gone beyond her optic nerve, into the bloodstream, it can be difficult to treat, even life-threatening. But Isla’s showing no irritation around the eye, so hopefully that’s a sign that it’s contained. Her operation’s scheduled for a week today.

October 9, 2007

A fitful night’s sleep again last night, with horrible nightmares. I’ve barely given a thought to the new baby. If Isla needs chemo, she’ll be in the middle of it right when the baby’s due. Sometimes I wish I wasn’t pregnant. I know it’s a terrible thing to say, but it’s how I feel right now. I can’t cope with a baby as well as everything else. I just want to devote all my time and attention to Isla, and being pregnant makes me too exhausted to do that.

October 10, 2007

How do you tell a two year old they’re going to lose an eye? In some respects the fact she’s already blind in that eye is a twisted bonus as she’s had time to adapt.
The nurses told us to explain that the bad eye will simply be replaced with a ‘magic eye’. Isla almost seems excited by the whole adventure.

It was my turn to have a bad day today – breaking down in tears every time I look at Isla and unable to make sense of anything – so Rich took her out to give me some space. We have this unspoken understanding and seem to sense when the other is struggling to cope.

October 14, 2007

I keep thinking these are the last few hours I’ll spend with my baby in one ‘perfect’ piece. The tumour’s grown so big you can see it at the back of her eye now, like a small, yellowy puffy ball. I feel sick every time I see it. I have no idea what to expect tomorrow. It feels like we’re saying goodbye to Isla as we know her.

October 16, 2007

The operation was the longest two hours of my life. Isla’s now bandaged up and looks like she’s done 10 rounds with Mike Tyson, but it all went to plan. She’s still too swollen to see her ‘magic eye’ – an implant with a plastic lens designed to look like her old eye. It’ll be two weeks before we’ll know if she needs chemo.

Poor Rich was so tired this morning, he spent five minutes gazing at his wife and daughter dozing on the ward before he realised he was standing by the wrong bed!

Isla’s efforts to bounce back paid off when the nurse discharged her a day early. We’re staying at a nearby hotel tonight just in case there are any problems before we drive home tomorrow. The doctors and nurses have been superb – so patient and understanding.

October 18, 2007

Isla’s eye opened up a little today. It’s still bruised and swollen but she seems fine. She caught sight of herself in the mirror and looked startled. I did my best to persuade her she’s getting better, but I don’t think
she was convinced. She’s still on antibiotics but is off painkillers. She’s such a toughie.

October 25, 2007

I wept with relief when they told me Isla won’t need chemo. It’s been hanging over us since the operation. We’re now looking forward to getting back to normality and welcoming our new addition to the family.

July 2008

Nine months on and Isla’s adapting well to her ‘magic eye’. She’s also relishing her new role as big sister to baby Charlie, who arrived in January like a ray of sunshine after those dark months.

Tests showed Isla had the non-hereditary form of retinoblastoma, so Charlie won’t suffer the invasive screening procedure that’s needed under general anaesthetic. Isla faces years of hospital visits to check the tumour hasn’t returned. The chances are slim, but it’s comforting to know she’s being monitored.

We’re taking one day at a time, and we’re extremely grateful that our little live wire is still with us.

Has a serious health problem affected your child? If so, how did you cope with it? Do you have any messages for the family of little Isla?

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Photography: Gemma Day. Hair & make-up: Sara Bowden. For info on retinoblastoma, contact The Childhood Eye Cancer Trust on 020 7377 5578/chect.org.uk Julie donated her fee for this story to Birmingham Children’s Hospital