The Kiwi mother and daughter who both lost an eye to cancer

Sometimes Lily asks me why we have to have this and I say other people have one arm or one leg - we’ve got one eye.

To look at Melanie and Lily Murphy you can tell that they’re mother and daughter. They share the same enviable straight hair, wide smile and gorgeous dark eyes.

But if you look more closely you’ll also notice that Melanie, 36, and Lily, six, both have an artificial left eye. Both mother and daughter were born with a form of eye cancer, retinoblastoma, and both lost their left eye to the cancer as babies.

Their stories of diagnosis and treatment, 30 years apart, are very different. Melanie’s cancer was not detected until she was 13 months old and by then it was too late to save her eye. Lily’s cancer was detected early, giving the family the opportunity to try and save her eyes.

In Melanie’s case there was some radiation treatment but it was not effective and her eye was surgically removed when she was two years old.

The beauty therapist from Auckland says it was a Plunket nurse that had picked up that something was not right and Melanie is thankful she did because when retinoblastoma is not detected, and left untreated, the tumours can seed, get into the bloodstream and in worst case scenarios, kill you.

Knowing that retinoblastoma can be genetic, Melanie insisted that Lily was tested for the condition when she was born in October 2011.

Lily had a 50/50 chance of having the cancer, Melanie says, and the results sent a bolt of shock through her. She and husband Brent were told that Lily had the condition in not one but both eyes.

“We were just gutted, I couldn’t believe it,” Melanie says.

Lily at three weeks old, with dad Brent. The glow in her left eye indicates there is a tumour behind it.

At just three weeks old Lily underwent her first round of chemotherapy and over the next 12 months she endured many more sessions of intensive chemotherapy treatment, as well as laser treatment. The two-pronged approach is known as ‘fishtailing’.

In addition, every month Lily had to undergo hour-long EUAs (examination under anaesthetic where dye is dropped into the eye). There were daily injections following chemo to support her immunity, and regular MRIs.

Melanie says it was an extremely difficult time for the family.

“After chemo… the nights were really hard. Lily was in pain and nauseous and wouldn’t stop crying. I would sing Silent Night through my own tears trying to settle her, walking her up and down our hallway.

“I remember one day being in the oncology ward with my mum and I was looking out the window watching my husband drive away and I just burst into tears… I was like ‘I shouldn’t be here, I should be home with my baby’.”

There was a particular set of traffic lights on the way to Greenlane hospital that whenever Melanie reached them, her heart would start pounding. “They meant we were near the hospital and the trepidation would begin.”

Lily after a chemo session. One of the side effects was puffiness.

To complicate matters, Lily was also born with a soft cleft palate, which made it difficult for her to feed as a baby. Mel had to express her breast milk and feed Lily by bottle; and doctors could not repair the cleft palate while Lily was on chemo.

After 12 months of chemo, Lily was taken off it and the soft cleft palete surgery was performed.

“But because she was off the chemo the tumour in her left eye just went crazy,” Mel recalls.

At Lily’s next EUA Melanie was sat down and told the team was not happy with how Lily’s left eye was looking. It would need to be surgically removed.

“I just felt really peaceful, I was almost expecting it,” Mel says quietly.

“After a whole year of going to these appointments waiting for my baby and wondering how her eyes were – when it was all so intense and so stressful – it was almost a relief to make that call, even though we’d tried to save her eye.”

As she drove home from the hospital that day the tears began falling and it was another three days before they stopped.

Lily at 18 months old, one week after her eye was surgically removed.

The surgery was performed quickly after that (Lily was 18 months old), and then the family took a much-needed family holiday in Taupo. They’ve since made an effort to take a family holiday together every year. The latest was to Australia.

Lily still needs to have her right eye monitored, but it’s looking healthy and tumour-free, so the check-ups have become annual.

Lily, now six, is not 100 per cent okay with having an artificial eye, Mel reveals.

“She often says, ‘Mum, I hate having a blind eye’ but I say ‘darling no one even notices’. The doctors at Greenlane [who create Lily’s artificial eyes] are amazing, they’re very clever and artistic and most people don’t even notice the difference; she gets a new one every couple of years, as she grows.

“Sometimes she asks me why we have to have this and I say, ‘I don’t know darling, it just happened. Other people have one arm or one leg – we’ve got one eye.’

“It’s a hard one but you adapt and that’s what I say to other families who are going through this… My sister forgets I even have an artificial eye and you just get used to it. I can drive, I can do anything.”

Melanie, Lily and Brent on a family holiday to Fiji when Lily was four. This holiday was extra special because they’d just found out Lily no longer had to have MRIs.

One of the positive things to have come out of what Lily and her family have been through has been the overwhelming support they’ve received from the Child Cancer Foundation.

“The Child Cancer Foundation were there from the get go,” Melanie says.

Over the years the Child Cancer Foundation has given the family food hampers, petrol vouchers and vouchers for food. They’ve thrown Christmas parties and pampering sessions for mums and provided tea and biscuits and an ear for listening after chemo sessions.

They connected the Murphys with other families going through the same experiences. The Child Cancer Foundation even funded Melanie to complete an advanced make-up application course. Mel uses her learning to volunteer at Look Good Feel Better, a service that empowers women with cancer.

For every procedure Lily has had – from chemo to ‘pokes’ for blood tests, injections, MRI scans, surgery – the Child Cancer Foundation has given Lily a bead.

At six years old Lily has 267 beads.

March 2018 marks the Child Cancer Foundation’s 40th anniversary. To say the Child Cancer Foundation has made a difference to the lives of Kiwi families like the Murphys is an understatement.

“Looking back, we’re not sure how we even got through it,” Mel says. “You just go through the motions. We were down to one wage, Brent was working while I had all these appointments.

“I remember day one so vividly, wishing so badly that we were at the other end. And now we are. I want to say thank you so much Child Cancer Foundation, who were a huge part of our lives for five years. Having their support helped us through our journey immensely.”

Retinoblastoma is an eye cancer that starts at the back of the eye, most commonly in children. Retinoblastoma may occur in one or both eyes and has few, if any, symptoms at first. It may be noticed if a pupil appears white when light is shone into the eye, sometimes with flash photography. The eyes may also appear to be looking in different directions. Treatments include chemotherapy, radiation and laser therapy.

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