One thing I don’t often think about is how our boys’ deaths have affected our two daughters. You see, Cody and Luke both died before they were born. Our girls now 14 and 12 have grown up around the memories we keep in our house–things like the photos. On occasions we pull out Luke’s box of keepsakes. In it are some of his baby clothes, scrap books and photo albums. We also kept all his funeral records, the sympathy cards, etc. At times when the girls’ friends come over they have no idea of our past and the fact they had two brothers. Even now, many of our acquaintances have only recently learned of our past. This has been due to the fact that our eldest daughter Tayla was recently diagnosed with a rare neuroendocrine tumour in early 2012. Our son Luke also had a type of neuroendocrine tumour, or NET, called neuroblastoma. Could this just be a coincidence?

After Tayla’s surgery to remove the benign mass, we were referred for genetic counselling at our local hospital. It was possible that Tayla may have a hereditary condition causing the tumours to grow. Just a simple blood test would tell us whether it was genetic or just sporadic. Luke’s DNA was also tested the results were not what we were expecting. Some four months later we finally received a phone call to say that the geneticist needed to speak to us as they had found a mutation. The news was that Tayla had a genetic mutation called SDHB http://en.wikipedia.org/wiki/SDHB that was causing a type of NET called a Paraganglioma to grow in her abdomen. Luke’s DNA sample showed no evidence of this gene.  I really thought that it was more than likely he had inherited it, as it would finally give us an answer as to how he developed his cancer. So it just came down to really rotten luck and his case appeared to be sporadic. Since 2012, Tayla has been closely monitored, as her genetic mutation means that she will develop more of these tumours, and there is a possibility that she could develop other types of cancer. My husband, daughter and I were then tested for the gene, some four weeks later, it was discovered that my husband and younger daughter also had SDHB. The odds are 50% and only one copy of the altered gene is needed to develop SDHB. There is also a chance that the girls could pass this onto their offspring. So all of my family need regular screening annually as a safety measure.

Tayla has since endured another operation (January of 2013) to remove two more tumours, with another operation scheduled this year to remove two more. Tayla has an amazing outlook on life and has matured a lot in this time. She has endured more than most girls her age, yet still continues to be positive and shows amazing resilience. We are unsure of the prognosis and continue to raise awareness around her condition  fundraising for the http://www.unicornfoundation.org.au  and raising awareness through the local media. Her illness has again brought us down to earth in a big way and opened the flood gates again. By this, I mean the grief over losing our two boys. How could this be happening again??????  Surely not! Both children exhibited very similar symptoms prior to diagnosis that were frightening. We still continue to pray that things will be different this time. Hopefully she will lead a very full and active life, where her illness does not define her.

Tayla in PICU April 2012

Tayla in PICU April 2012