Diagnosis: Retinoblastoma
Our Mila…
Our daughter Mila (who is now 7yrs old) was diagnosed with Retinoblastoma (Cancer of the retina) at just 16 months of age. Shortly after her 1st birthday I started noticing that sometimes it took her right eye a little longer to focus on me, mainly in the bath at the end of the day. I never noticed the typical “white glow” with Mila. I had also never heard of Retinoblastoma. Feeling like I was being too precautious, I booked her an appointment at our local Spec Savers- thinking that she may need glasses. I’m not sure if it was mother’s intuition or divine intervention looking over us but either way I’m so thankful for that gut feeling otherwise we fear Mila may not be here today.
The optometrist had a quick check of Mila’s pupils and then told us to come back to him in 10 mins. “How rude” we thought. When we returned, he told us that he had arranged for an appointment with a specialist in the city the next morning at 8:30am and told us “You’re going”- As a nurse/ midwife myself, this set off some alarm bells –
Who can get into a specialist at such short notice? The following morning we went down to Melbourne (still without being told what may be wrong) where the Ophthalmologist told us she suspected Mila had Retinoblastoma, and that if left untreated it could be fatal.
From there we were rushed to the Royal Children’s Hospital in Melbourne where a few hours later Mila, our 16th month old baby was having her first (of many) general anaesthetics which later confirmed their suspicions, and from there our whole world stopped- fear of the unknown, and the rollercoaster of living life having a child who had been diagnosed with cancer began.
Her tumour was Grade E- meaning it was too large for chemotherapy /radiation and the only solution was to enucleate her right eye to stop the cancer from spreading.
The week after diagnosis Mila went in for life saving surgery to remove her right eye. We will be forever grateful to Dr Elder, Dr Staffieri and the world class team for all of their incredible care with our family. Shortly afterwards Mila got fitted for her first prosthetic eye and has been wearing one ever since.
This has, of course, brought with it many challenges along the way; from both of us having to hold her down screaming to put the eye in/out; taking out her eye and sticking peas in her eye socket as a toddler, to the eye now falling out at times on the monkey bars at school. The long fasting car trips to Melbourne on a scan day with screaming breastfed babies who can’t understand why Mummy won’t feed them; the burning eye drops to dilate the pupils; the daily eye cleans; dryness of the eye; wearing glasses on windy days; trips to the ocularist for prosthetic polishes/ fittings/ remouldings/ 2 hour hand painting sessions are all just a part of life now and the kids don’t know any different.
Mila has always been our biggest inspiration and our greatest teacher. As the parent you are strong, not because you want to be but because you have to be. You feel guilty and look for blame, you pray why can’t it be you losing an eye and going through all of this instead of your child, you cry more than you ever have. Then, you find strength even when you think there is nothing left, one day at a time.
One thing is certain and that is that you never give up hope. HOPE is the only thing that is stronger than fear. Mila’s eye was sent for genetic testing but unfortunately all test results have come back inconclusive. So we still don’t know if it is genetic or not.
Does the fear ever really go away that it won’t return? I’m not sure. Mila still attends the Royal Children’s Hospital for regular check ups and scans and to make sure the cancer does not return in her other eye. Our son has also had regular general anaesthetics and scans since 3 days of age because of the genetic results being inconclusive. Mila currently goes through about 2 prosthetic eyes a year (depending on how fast she grows). She has been through so much in her young life; we hope the hardest part of her life is already over- which is a lot to say about a 7 year old, but she’s endured more than most adults ever will. Mila lives with this day in and day out, and yet to look at her you would never know- she is absolutely thriving and is pure joy.
Mila is the kindest, happiest 7 year old girl with more determination and resilience than anyone we know. Not many 7 year olds have a jewellery box full of prosthetic eyes. Many things we have now “nailed” and other times we are still learning as new challenges arise. RB changed our lives forever. Life for us may never be “normal” again, but instead it is our new normal. The day that Mila got her eye taken, a little piece of our hearts broke forever. In Mila’s situation I will never agree with the old saying “Everything happens for a reason”, but I will say that the blessing amongst it all is the perspective
on life it has given us. We cheer loudly for good health and happiness, because that is worthy of all the celebration and should never be taken for granted, a blessing that is often so unfairly denied to so many. Mila has been cancer free for over 6 years now, we truly are the lucky ones.
We know that this will not define Mila, she is just starting to realise what all of this means and as her biggest fans we know that she will face any challenges that come her way in life with an abundance of strength; resilience; courage; bravery; grace and a whole lot of love and support behind her all the way. We couldn’t be more proud of our darling girl.
Kelly (Mila’s mum)
(white cloudy glow in hindsight in the Right eye)
(Days after surgery to remove her eye)
(With Dr Sandra Staffieri, the Retinoblastoma Care Coordinator at the Royal Children’s Hospital, Melbourne)