Maria Pezzente

Our little Leo was born in February of 2007, a seemingly healthy baby boy to complement our little family which already included 20 month old Alessia. All was well with Leo being exactly the chubby happy baby he was supposed to be until one Friday evening, June 1, 2007, when he was just shy of 4 months old. We noticed a strange white hue over his left eye when reviewing photos we had just taken on our digital camera. We thought this was very odd and jumped online to research the white pupil we were seeing thinking we may be dealing with cataract. Our online searches lead us to several retinoblastoma sites however and we certainly knew we had to take prompt action.

The following morning, Saturday, we headed to the ER at Sick Kids Hospital here in Toronto with the photos in hand. By the evening we had the diagnosis, Leo had retinoblastoma. Thankfully his right eye appeared unaffected and so we were scheduled to have an enucleation that very Monday morning pending final confirmation that the tumour had not spread beyond the eye and that the right eye was healthy. As that was indeed the case, Leo?s eye was enucleated that Monday morning.

Leo had a tiny tumour appear in his remaining eye within 8 weeks, but that was not unexpected as genetic testing had determined Leo had the germline mutation. Of course the tumour posed no problems to treat as the extraordinary team at Sick Kids were keeping such close tabs on him.

None of us were prepared however for what followed on August 1st, when Leo was just shy of 6 months of age. He had rapidly lost all vision and his eye developed sudden involuntary nystagmoid movements. A CT Scan revealed a massive brain tumor and we had a further diagnosis of trilateral retinoblastoma.

Since that August Leo has been through many challenges, numerous cycles of chemotherapy, a rigorous intrathecal chemotherapy regime and he had a bone marrow transplant in February of 2008, a week after his first birthday. Though of course it is premature to say that we have beat this horrid cancer, we feel very optimistic about the outcome. Leo is recovering nicely and is now very much a happy energetic toddler! He has also regained most of his vision as the tumor has shrunk away from his optic nerve.

In the end unfortunately the earlier diagnosis that resulted from those photographs that revealed leukocoria didn't help in our case as Leo turned out to suffer from this very rare presentation of the disease. That does not mean however that the valuable lesson of detection through a photograph should be overlooked and we?ve undertaken the task of trying to enlist imaging industry corporations and large retail and photo developing chains internationally to launch parental awareness campaigns.

In the end it seems like something very positive will result from Leo's diagnosis. Clearly he is an inspiration not only to us, but countless others!