In September 2015, Ellie, aged 13, was diagnosed with stage 4 Alveolar Rhabdomyosarcoma. Ellie’s care was led from Nottingham Children’s Hospital, where she underwent 9 cycles of intensive chemotherapy, along with 28 sessions of pelvic radiotherapy, then 12 cycles of maintenance chemotherapy.
Ellie’s treatment was successful and eight years since her treatment ended, she remains in remission. Ellie is now 24, and September 2025 marks ten years since her rhabdomyosarcoma diagnosis. She is currently at University studying Medicine and lives with an ever-growing list of health problems, resulting from her treatment. These have been and continue to be complex to navigate alongside education, work and life.
Ellie is passionate about advocating to reduce the number of long-term health problems that survivors are left to cope with.
My journey all started when I found a small lump in my left butt cheek. I was 13 at the time and thought nothing of it, assuming that it would just go away on its own. Instead, over the weeks and months that followed, the lump grew bigger. And I also began to notice other symptoms, such as constipation, leg pain and fatigue. I did not tie all of these symptoms together, instead thinking they were separate entities. I put my leg pain down to overtraining, constipation from not eating enough fibre and fatigue to not sleeping well. Despite the lump growing consistently, I chose to not tell anyone about it. In truth, I was so embarrassed by it and naively thought it would go away.
Several months after discovering the lump, my family and I participated in a 5k fun run. Normally, being the sporty one of the family, I would have got through it with ease. Instead, by the 3k mark, I had to leave the race because the pain in my left leg was so intense. It was then that I decided it was time to tell my parents about all of the strange symptoms I had been having. After a trip to the doctors, the leg pain was put down to a sports injury, the lump was thought to be a perineal abscess. I was given a course of antibiotics. I felt such relief that the lump was being treated and that I could now stop worrying about it – little did I know that I was just at the beginning of a very long journey ahead.
By the third course of antibiotics, I knew that something more serious was going on. The lump was growing rapidly, so much so that not only was I constipated, I also could not urinate properly. I felt exhausted and could barely keep down any food. It just so happened to be the first day back of school, my first year of GCSEs. I forced myself to get dressed and ready for school, not wanting to jeopardize my perfect attendance. However, my mum took one look at me and said that I was not going to school, she was sending me straight back down to the doctors. This time, I saw a different GP, who took one look at the lump and sent me straight to the local hospital. There, I had emergency surgery to remove ‘the abscess’.
Following the operation, the surgeon told my parents that no abscess could be found, instead lots of ‘abnormal tissue’, which they took a biopsy of. Back then, ‘abnormal cells’ meant nothing to my parents and I, cancer did not even cross our minds. After a few days of mystery tests and scans, my parents were eventually told that I had cancer and needed to be transferred to the Nottingham Pediatric Oncology ward straight away. Initially, I was in complete shock. Children don’t get cancer. Bad things do not happen to people like me. But, once I had processed the news, I felt some relief that we finally knew what was going on and, looking back at all of the symptoms, cancer actually made a lot of sense – typical me was kicking myself for not thinking of it before!!
The first week at Nottingham was a blur – lots of tests, scans and important decisions to be made. Deemed to be too unwell at the time, I was not involved in the meeting to confirm my diagnosis and treatment plan. My parents came back and told me that I had Stage 4 Alveolar Rhabdomyosarcoma and that I needed 18 months of treatment. I remember them having a very positive attitude and reassuring me that we would fight this cancer together. I felt extremely motivated to beat it. What my parents chose not to tell me from that appointment was that I had only a 20% chance of surviving 5 years past diagnosis, and that the treatment would most definitely render me infertile. But I am glad that my parents withheld that information from me, because at such a fragile time it would not have helped.
Straight away I was commenced on the IVADo treatment regime. I had 9 cycles of intensive chemotherapy, along with 28 sessions of pelvic radiotherapy, then 12 cycles of maintenance chemotherapy to complete. The treatment took a massive toll on me: I lost so much weight that I had to have a feeding tube, I was weak and exhausted all the time, I developed foot drop and debilitating neuropathy. I almost felt like a shell of myself and could not comprehend how much my life had changed in such a short space of time. I found that sharing my journey through social media was an amazing outlet for me – it gave me a sense of purpose and allowed me to connect with other young people, like me.
Fortunately, my cancer responded extremely well to the treatment, and I entered remission in March 2017. I went into it thinking that I would recover in no time and go back to all the things that I was doing before. The reality was much different. I was dismayed that I felt so exhausted, weak and had pain in places I never used to before. Somehow, I was struggling more with my mental health in remission than during treatment – how could that be? I felt frustrated at myself for not feeling happier and ‘not making the most’ of the second chance I had been given. I felt I should not complain about the problems I had, because I needed to be grateful to have survived the cancer.
Fast forward to now, I am 8 years in remission and still trying to figure it all out! Remission has brought with it many more hurdles than I was expecting. Learning how to cope with all the ever-growing list of health problems I have, alongside keeping up with work and education, has not been an easy feat. I often worry about what the future may hold for me, will the aggressive treatment I had as a teenager condemn me to a life of more serious health problems to come? Whilst it is a scary thought, I am also a strong believer in focusing on the present and not worrying about what tomorrow may bring. So, for now, I am focusing on completing medical school and becoming the best doctor that I can be.
I feel extremely honoured that Alice’s Arc has allowed me to create my very own ‘Ellie’s Arc’. This September (2025) marks 10 years since I received my rhabdomyosarcoma diagnosis, so I feel more motivated than ever to raise money for such an amazing charity, to help propel research forward. Without awareness and fundraising, advancements cannot happen, and children will continue to die of this horrible cancer. Please consider donating to my JustGiving page. Thank you.
At the beginning, it was absolutely terrifying, and I felt like I was being chucked in at the deep end. I remember going to the children’s cancer ward for the first time, speechless at how many sick, bald kids I could see around me, unable to comprehend that I was now one of them. I remember how hard it was for my family to see me so ill, particularly my twin sister. They felt helpless. But I was fortunate that my family, friends and local community were all very supportive, allowing me to stay positive and determined. In fact, I strangely found a deep sense of purpose whilst I had cancer. I began to document my journey on social media, wrote a regular blog and worked with childhood cancer charities. It was very cathartic for me, because it allowed me to put a positive spin on the horrific situation that I found myself in.
Whilst I am grateful to have survived the cancer, I do struggle daily with the long-term health conditions that I have acquired as a result of my treatment. At my lowest points during remission, I have even wished that I didn’t survive the cancer, feeling that that would have been easier than coping with a lifetime of debilitating health problems. So, my hope for children diagnosed with rhabdomyosarcoma is that new, more effective and less toxic treatments are developed. It is absurd that the only option for these children are treatments that have not changed for decades, treatments that were always meant for adults. It is unfair that survivors of this disease should have to live with the burden of its treatments for the rest of their lives. Our only aim should not only be increasing survival rates, but to reduce the number of long-term health problems that these survivors face also.
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