Gauging by her body language I think I knew what the Oncologist was about to say to us regarding Tayla’s recent PET scan results. AS we sat in her office I could see she was perplexed “Well something is going on here Tayla, something is not right!” she said. As she spoke about the recent scan, she mentioned there was uptake to another lesion, she said it wasn’t very large but of concern. There was empathy and I think she felt as dejected as we did.
Tayla broke into tears, I really felt for her…and felt helpless. My husband and I both wish it were us going through this, not her! But we will love and support her through it, show our anxiety, our concern and just worry like hell as parents.
Despite the news Tayla decided to call this infiltrator ‘Fred’, it has a name now. Our daughter has shown so much courage, and has such an incredible outlook on life, despite her condition. Her energy levels are always so high, she bounds around the house, occasionally throwing in a highland fling.
As her oncologist said to us, “It is unfortunate Tayla but this is how life will be.” We now await comfirmation regarding the treatment option; chemotherapy, radionuclide therapy and surgery have been mentioned, most likely to be the later.
*Tayla has a rare genetic mutation called SDHB which means she is susceptible to developing a type of rare tumour called a Paraganglioma. So far three tumours in total have been surgically removed within a period of nine months. These tumours are usually found in the abdomen, head or neck regions.