Heather’s Story
Heather was diagnosed with Stage 4 Neuroblastoma at just 18 months old in 1990. Despite statistics not looking promising, Heather is now a happy and healthy 36-year-old. She shares her story today as a story of hope for families facing neuroblastoma…
My name is Heather and I am a Neuroblastoma survivor. I was diagnosed with Stage 4 Neuroblastoma when I was 18 months old and wasn't given the best prognosis. However, due to the endless research I was lucky enough to have a happy ending to my cancer journey. I am now a 36 years-old, happy, healthy and a mother of two.
My parents first thought something was wrong when my mum felt a lump in my stomach. The GP didn’t think there was anything of concern, but my mum, who is a Therapeutic Radiographer, wanted to be sure, so took me to her work. Her team was able to scan me and in doing so found my tumour. I was later diagnosed with Stage 4 neuroblastoma. Our GP admitted it was a massive learning curve for himself and made sure that his practice was more educated on neuroblastoma going forward.
I went through a year of treatment at the Llandough hospital in Cardiff, including; surgery, chemotherapy and a bone marrow transplant. They also removed part of my kidney and adrenal gland. Thankfully, after a year of treatment I went into remission and I have never relapsed since.
My mum took a year off work whilst I was having my treatment and my dad who was in the military so would come back and forth. I think Mum’s backgrounds a Therapeutic Radiographer was a blessing and a curse, because she knew a lot, but probably too much. Neuroblastoma statistics can look bleak and she knew exactly what the doctors were saying. She told me once that she never realised the doctors weren’t explaining my treatment in laymen terms for my dad, even when they gave me the all clear, she had turned to him and saw a look of fear in his face - he had thought it was more bad news.
I don’t remember much of my treatment as I was only 18-months-old when I was diagnosed but I do remember my follow up appointments. We went to yearly check ups until I was about 10 years-old and then every two years until I was 27. I remember being interested in the X-rays and the investigative side. I think spending so much of my childhood in hospitals getting scans is partly why I became an Advanced Practitioner Radiographer for Breast Test Wales. I also wanted a chance to give back in some way.
One of the reasons I had tests until I was twenty-seven was because of the worry of how my treatment affected my fertility. It was not an option at the time to have your eggs frozen and I know my mum was very worried about how the treatment decisions they were making would affect me in the future. However, at twenty-seven I was lucky enough to fall pregnant with my daughter who is now eight. I have also gone on to have a son who is now five years-old. When I fell pregnant without medical intervention, the nurses were so happy for me. There were much less options for fertility when I was having treatment and they knew it was a story of hope for other families.
My family have been donating to Neuroblastoma UK for years. We know how important it is to support this cancer. My Grandfather and Aunt both left money in their will to Neuroblastoma UK and as a family we have continued to raise funds. Recently I took part in the 100 Miles in September Challenge and I think it was such a positive way to help raise awareness and funds. On my walks, I often brought along friends who had never heard of neuroblastoma before. It gave us a chance to talk about the disease and my experience, conversations I might not have had otherwise.
We need more positive promotion of neuroblastoma, it is a terrible disease but I am proof there is hope even when the odds are not looking good. I am here and I am okay. I want to continue to help this wonderful cause so that many, many more families and children can have the same happy ending to their cancer journey too.
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