Ellie's story
Ellie today, after being diagnosed with stage three neuroblastoma nearly ten years ago
Ellie was diagnosed with stage 3 neuroblastoma when she was 13 years old, after an unusual lump was found in her abdomen. Now cancer-free for five years, Ellie is currently completing a Sports Science degree, is a part-time gymnastics coach and has recently become a volunteer at Neuroblastoma UK! This Teenage and Young Adults Cancer Awareness Month, Ellie shares her story to inspire other teenagers with cancer.
Symptoms and diagnosis of neuroblastoma
“[Neuroblastoma] is most commonly found in children up to the age of five, but in my case it was found when I was 13 years old. The tumour had already grown to the size of a grapefruit (13cm). ”
“I had experienced quite a few recurring belly aches and would often feel too full up to eat if I ate something small or had a drink before dinner. When I discussed this with my consultant during one of my regular hospital appointments for another ongoing health issue, they found an unusual lump in my abdomen.
I was referred to the oncology ward at Birmingham Children’s Hospital and booked in for a scan immediately. That was when I found out I had stage 3 neuroblastoma. This cancer is most commonly found in children up to the age of five, but in my case it was found when I was 13 years old. The tumour had already grown to the size of a grapefruit (13cm).
Back when I had it, I was quite oblivious as no one would use the word ‘Cancer’ around me, maybe to prevent me from panicking. All I knew at the time was that I had a lump in my stomach and the surgeons were going to take out. Everything went by so quickly and it was part of my daily life. It felt very demanding, and the appointments were a lot to deal with and tiring. I never knew what type of cancer I had until after my recovery when I started to ask loads of questions. Looking back it would have been scary because it's rare for my age.
Surgery and recovery
“ I didn’t know what to expect, how it was going to go or what recovery was going to feel like. And I’d never been through something as big as this before.”
After what felt like hundreds of scans such as MRIs, ultrasounds, CTs and bone marrow scans, I was fortunate to not need any chemotherapy or radiotherapy. They were confident that it would not get any bigger and there were no signs of it becoming attached to my main organs. Me and my family were very relieved that I didn’t need chemo, but we were still unsure if I would have to lose one of my kidneys in the operation. It was unclear whether the tumour was attached to my kidney or not. I had to wait for my main operation on 10th February 2012.
Ellie in hospital shortly after surgery
Waiting for the operation felt like a long process - it felt like everyone was talking about my op day for weeks and as the days got closer I started to feel anxious. I didn’t know what to expect, how it was going to go or what recovery was going to feel like. And I'd never been through something as big as this before. The operation was meant to only be a couple of hours, but in the end it took around seven hours as I lost a lot of blood and needed multiple blood transfusions. But I was able to keep both my kidneys, which we are so grateful for.
“I was in hospital for just under a month, on a paediatric ward. I remember seeing younger children like toddlers and I think there was only one person my age. ”
I was in hospital for just under a month, on a paediatric ward. I remember seeing younger children like toddlers and I think there was only one person my age. Most of the time I was exhausted from the operation and epidural. I was asleep for at least the first two weeks post-op! I would wake up for about five minutes and go back to sleep. I could barely move as I lost the muscle to sit up. I had a TV but I never turned it on. When I was feeling better, I passed the time with the volunteers who would provide games, arts and crafts and cards to play. I loved that.
I had the best news of being Cancer free
“The all clear was emotional, as the hospital was a big part of my life. When you finally leave, it was weird as it wasn’t part of daily living anymore”
Ellie was able to go home a month after her surgery
I needed regular checkups, and with every positive scan/appointment, I then had appointments monthly, which turned into every two months. No other treatment was needed.
In 2018, I had the best news of being cancer free and was discharged from the oncology department, thanks to the amazing support from my family and consultant.
The all clear was emotional, as the hospital was a big part of my life. When you finally leave, it was weird as it wasn’t part of daily living anymore. Luckily, I had no exams coming up (up until 2015, the following year after the op) and my grades stayed the same at school.
The impact of cancer
“Rather than going out, I was and still am involved in a gymnastics club. The club was a break from the hospital and the escape from knowing I was ill, along with giving me independence. ”
Ellie’s scar covers her stomach from left to right
I’ve got a scar that covers my stomach from left to right and I have got an umbilical hernia on the left side of my stomach. The hernia comes out often and is something I will keep for a lifetime unless I decide to have surgery to prevent it from coming out. The pain is sharp and takes my breath away when it happens. But I’ve learnt to deal with it as there is nothing I can do about it at the time.
I have always been proud of my scar, and I am confident to wear anything.
I understand that people will look because it's unusual, but rather than staring, I appreciate people asking if they have questions about why I have it, as I would always be open to sharing. The scar has slightly faded but is still clear to see, the scar area still has a numb feeling to it, and I never used to be able to touch it especially when I had to put suncream on it.
Supportive friends and family
Ellie with family and friends at a charity run
My diagnosis really impacted my family. My parents worked full-time for the prison service and fire service meaning they had to get time off to support me whenever needed for the appointments. As my appointments were for bone marrow and MRI scans, I needed an ink contrast into my system for a clear picture. This meant we needed to plan to be at the hospital for most of the day.
We took each day as it came and supported each other by always talking and reading the support materials for families on the Neuroblastoma UK website. I have a sister and I know it was a lot for her to take in as we’d always be at appointments, and she had to carry on going to school like normal. She always took care of me and always made sure I was okay. I know she found it hard to see me in the hospital and I know she probably kept a lot of emotions to herself.
My friends were very supportive and understood that I would be in and out of school a lot. Rather than going out, I was and still am involved in a gymnastics club. Even though I could not participate in physical activity from when I was diagnosed up until I was fully recovered from the operation, I still had a place in the club and was there talking to the coaches and my friends. The club was a break from the hospital and the escape from knowing I was ill, along with giving me independence. My parents also got some alone time to just breathe and have a much-needed rest.
“Your charity really made an impact. Our oncologist told us about Neuroblastoma UK as we didn’t know there was a specific charity out there for neuroblastoma.”
Your charity really made an impact. My mom was always searching online about my illness but it was often negative and wasn’t accurate. Our oncologist told us about Neuroblastoma UK as we didn’t know there was a specific charity out there for neuroblastoma. They provided the answers and clarity my mom needed as she was struggling psychologically. When I became cancer free, myself, my mom and friends took part in a 5k charity run to raise as much money for the charity as possible.
I am currently finishing off a sport and exercise science university degree with the expected grade of 2:2 or First class. I’m looking forward to volunteering with Neuroblastoma UK and I love working as a gym instructor.
My advice for teenagers with cancer
“Cancer does not define you...There will always be bad days and good days, but you are stronger than you think you are. ”
Take each day as it comes and live every day doing what you love. Cancer does not define you and what you can and can’t do. There will always be bad days and good days, but you are stronger than you think you are. Lastly, be open with your family and friends who support you and talk about cancer. That’s one thing I wish I did as it would have been good for my family. Never be afraid to ask questions - I'm pretty sure most people who have or are going through cancer will be open to answering questions, especially me.
Our sincere thanks to Ellie for sharing her story. Search #TYACAM to follow Teenage and Young Adult Cancer Awareness Month and find out how the charities are raising awareness and how you can get involved this April.