If there’s one thing I’ve learnt, it’s to trust your instincts. So many people think ‘it won’t happen to us’, but really, anything can happen to anyone. Even a smiling, happy baby. Which is why now, I was sat in my GP’s surgery with my husband Steve and our daughter Lavinia.
My husband Steve had first spotted something scary in Lavinia’s eye a couple of weeks earlier when he’d been getting her ready for her bath. As he’d taken her tiny feet out of her pale pink Babygro, he’d noticed a ghostly glare as her big bluey-green eyes reflected with the water and called me in.
I couldn’t see anything, but recalling a warning he had seen on Facebook, Steve went online to research it. I felt sick as, holding a now snuggly Lavinia, we both read that white glints could be linked to cancer.
‘Look, I said to Steve,’ it says here to try and take a photo of her eye with the camera flash on to know for sure.
But with a wriggly seven-month old, that was easier said than done. Lavinia wasn’t playing ball and we struggled to get a shot. Soon, she became tetchy. As we could no longer see the glare in her eye we eventually gave up and hoped we were worrying about nothing.
Still, doubt niggled. Steve had been so sure…
And ten days later – ‘Look!’ Steve cried, ‘there it is again!’
This time we both spotted the white glare as the light from a nearby lamp caught Lavinia’s eye.
Which was why the next day we’d requested an emergency appointment to see our GP. Still, as she bounced happily on my lap Lavinia looked so fit and well that to be honest, I wasn’t overly concerned. Best to get it checked out, just to be sure, I told myself.
Our GP said although there were lots of things it could be, he was pretty sure it was a cataract. He arranged for us to go to the hospital eye clinic for more tests.
But when we got there the following day – Halloween – I couldn’t help but feel alarmed when medics said they wanted to put Lavinia to sleep to take a better look.
I’d thought it would be a quick in-and-out visit. I’d even planned to take her trick or treating in her new Superbaby costume with family that evening. Now, instead, I dressed Lavinia in it to be taken down into theatre to be put to sleep.
I willed myself to stay calm, that they were just being cautious, right? What with her being so tiny… But afterwards, as we were quietly led into a room I knew it was bad news.
I felt sick as doctors told us they had found what they thought was a cancerous tumour called retinoblastoma in Lavinia’s left eye. I had so many questions but there could be no answers until they’d carried out more tests.
Two days later Lavinia was referred to The Royal London Hospital, one of the specialist centres for Retinoblastoma, where she was put back to sleep for more investigations. I don’t think I’ve ever been more scared, or felt more useless, in my whole life. She looked so tiny as she was wheeled down to theatre.
I would have given anything to have changed places with her. My baby.
The terrifying diagnosis was finally confirmed on 2nd November. Our world turned upside down when we were told that her tumour was already grade D – E being the biggest.I just kept wondering how we could not have known, how she could have still seemed so happy and…well, healthy.
Immediately, Lavinia started six cycles of chemotherapy to try and shrink the tumour. I wasn’t sure what to expect, but the side effects were horrendous. Lavinia had a gorgeous thick head of beautiful dark brown hair but it all fell out as the chemo took hold. As I scooped up handfuls of it from her pillow, my heart broke. What was happening to my little girl?
As the months passed, we went from being the parents of a contented happy baby, to one that kept being sick, constantly crying because she is in so much pain, and just wanted to be held. Lavinia’s time in isolation was the hardest because she went from a cheeky, chuckling baby to going weeks without even smiling.
But worst of all were her eyes. They seemed to look deep into mine, begging for it all to go away.
It was so, so hard. No one wants to pump their baby with this horrible poison, but knowing that it was doing her some sort of twisted good was the only reason we could get through it. Still. I have never wanted anything to be over so badly in my life. Each day was a trial.
And then there were the infections. Lavinia was really poorly between the third and fourth lot of chemotherapy when she got a line infection and developed sepsis and a raging fever. At one point, she was so pale and lifeless that she needed emergency surgery to remove the line.
Spending day after day by her side was draining. So many times she looked like she had given up. When you looked in her eyes it seemed like she had no fight left. She was so poorly. I wouldn’t wish that on any parent.
But then, ever so slowly, our little hero started to fight back.
She was still batting chemotherapy when she turned one in February this year. Just making it to that milestone was an achievement. We celebrated with a little family party at home.
Finally, in March the chemotherapy was complete and medics confirmed the tumour had shrunk and calcified – which meant it was no longer active. We’d never felt so relieved in our lives.
Lavinia will be carefully monitored now to make sure the cancer does not return.
Doctors believe she has little to no vision in her left eye but Lavinia doesn’t let anything stop her. She is walking and talking and cheeky, and is doing everything a normal baby does.
This year, we’re hoping for a quiet Halloween giving out trick or treat bags to kids in hospital – because they’ve already faced enough monsters to last a lifetime.
I never imagined being told on Halloween that our baby had cancer. It was the most terrifying and traumatic day ever, the worst trick anyone could ever have played on us. Believe me, nothing is scarier than hearing the C word in relation to your baby.The worst bit is she was so healthy.
She was a completely happy and healthy baby. Which just proves that unfortunately, cancer can touch anyone, any child.
So many people think, ‘it won’t happen to us’. We thought the same thing but believe me, it can happen to anyone. Thankfully though, our little hero has beaten the monster and won and we couldn’t be more proud of her. This Halloween it’ll be treats all the way.
To support visit https://www.gofundme.com/rainbow-ward-west-suffolk-hospital >