A Mother's Journey
18 March 2015
Two years ago I learnt that melanoma is not confined to just the skin and can touch those who are not in the “statistical bracket” through sun exposure, colour of skin, eyes or age. My hope by sharing a personal experience will bring awareness to a rare cancer - ocular melanoma (OM). Approximately 50% of those diagnosed will have metastatic disease and the prognosis is poor.
Nearing the end of the school holidays in January 2013, at an annual eye examination it was discovered that my 14 year old daughter had an anomaly at the back of her eye which was picked up by a digital retinal scan. She had no symptoms at this stage to suggest that anything was wrong. I had recently been diagnosed with glaucoma after having the same scan and, as glaucoma is familial, we thought it was prudent to do the same for my daughter to get a future reference baseline.
We went straight from our appointment to specialists thinking that it may be a retinal tear. After a couple of further examinations we were referred to an ocular oncologist who diagnosed a possible ocular melanoma. After conferring with his peers here and overseas, a decision was made for her to seek treatment in the UK that at the time was not offered in Australia.
Two years on she has lost the sight in the eye which can be extremely painful with intraocular pressure. There are regular appointments with her ocular oncologist and prior to seeing the medical oncologist undertakes a variety of scans and blood tests. These times bring on added stress with disruption to school and home life, as well as nervously waiting for the results.
As with most 16-year-olds she doesn’t want attention brought on herself or defined by this. She is busy getting on with life, as it should be. Should there be any bridges to cross in the future, we will just have to do so at the time. In the meantime, as a mother, I’m hoping that some brilliantly talented scientists out there unlock the genetics of this disease and find a cure.
My daughter is under the medical supervison of world-leading MIA clinicians as part of a multidisciplinary treatment approach. I am passionate about education and awareness for ocular melanoma and building platforms so people can have a better understanding of treatment options if they are going through the same thing.
With awareness and education we can inform other people about the disease. I have comfort that my daughter is being treated by the best, and that we can rally together to raise awareness and fundraising so that more research and treatments can continue and we can find a cure.