Niamh's story

26-year-old Niamh was first diagnosed with neuroblastoma at the age of 15 and suffered a relapse in 2020. Currently on a research drug trial, she is now doing well and has just completed her first ever marathon. Niamh shares her story for Teenage And Young Adult Cancer Awareness Month…

Diagnosed as a teenager

Niamh having treatment for neuroblastoma as a teenager

“As a teenager, I faced my treatment head on and my treatment just became part of a new routine.”

In 2012, when I was 15-years-old, I was diagnosed with neuroblastoma. I remember being petrified seeing adverts about children who had cancer. I just broke down when I heard my diagnosis. But then something switched, I faced my treatment head on and it just became part of a new routine.

Thankfully, after two years, I was given the all clear.

Relapsed neuroblastoma

“At fifteen, I felt like I was a trooper. This time, treatment was really tough.”.

“Thanks to research and all these new drugs and trials, my life has been saved, it’s incredible.”

But eight years later, I noticed that my lymph nodes were swollen. I visited the doctor and after further tests, was told my cancer had returned. I never expected a relapse after being clear of cancer for so long. I was in so much shock. I felt really fit and well, I had no other symptoms and I was the strongest I’d ever been. I just kept thinking ‘Why?’ At fifteen, I felt like I was a trooper. This time, treatment was really tough and I struggled to come to terms with it all.

Despite being in my twenties, I was treated in a paediatric ward. As neuroblastoma is typically a cancer in children, I was under the care of a paediatric oncology specialist. The team was amazing and really helped to put me at ease. There were no delays in scans or treatment and the doctors even helped to get my partner a COVID vaccination.

I went through around 16 cycles of chemotherapy over an 18 month period, while at the same time taking part in a new clinical drug trial. Whilst the chemotherapy was hard, my treatment went really well and after just a few months, I was told I had no active cancer cells in my body which was amazing.

After spending many months in and out of hospital, I eventually came off the chemo when my body could no longer take it and since then, I have continued with the clinical trial drug, taking six tablets a day. This will be my routine for the foreseeable future. Thanks to research and all these new drugs and trials, my life has been saved, it’s incredible.

Rebuilding and moving forward

Niamh during treatment for relapsed neuroblastoma in May 2021

“I feel so lucky to be part of a clinical trial specifically for relapsed neuroblastoma.”

On my last day of chemo, I picked up my new puppy to celebrate! My relapse and all the treatment I needed forced me to take a few steps back in my life and it took a while to rebuild. I had to stop my business as a personal trainer while I got my health back on track and had to start my fitness regime again from scratch when my treatment finished.

That said, finding out that I had no active cancer cells was a very special moment. And since then, I have managed to get some normality back in my life. I resumed training and am probably fitter now than ever before. I have been back working as a personal trainer for the last year and last weekend, I completed my first ever marathon, running the Paris Marathon in 4 hours, 12 minutes.

My scans every four months continue to show no evidence of disease which is amazing. Mentally, I’ve really moved forward and feel so lucky to be part of a clinical trial specifically for relapsed neuroblastoma. I wanted to share my story to help raise awareness of neuroblastoma and the importance of early detection. Funding research has such huge potential to give children with neuroblastoma a future and a better quality of life.

FUNDING VITAL RESEARCH. SAVING YOUNG LIVES.

Our sincere thanks to Niamh for sharing her story. Search #TYACAM to follow Teenage and Young Adult Cancer Awareness Month to find out how the charities are raising awareness and how you can get involved this April.

We fund vital research to develop new, less toxic and more effective treatment for children with neuroblastoma. Please donate today and join the fight against childhood cancer.