Happy and easy-going Ellen is always trying to make everyone laugh. The clown of the house, she’s especially close to her big sister Lucy, who’s just 17 months older than her. But in January 2018 after a series of visits to the doctor with tummy pains, she was diagnosed with stage 4 high-risk neuroblastoma.
Mum Claire says: “I will never forget the moment the radiologist said that she wasn’t happy with the scan. That was the moment when our lives changed forever. We were devastated.”
Brave Ellen started chemotherapy within days and since then has had 8 cycles with tough side-effects, surgery to remove the tumour, plus sepsis and fluid on her lungs. She has also completed high dose chemotherapy, stem cell transplant, radiotherapy and is now approaching the end of her five cycles of immunotherapy.
She faces an uncertain future – in around 40-50% of children with high-risk neuroblastoma the cancer comes back and of those children fewer than 1 in 10 will survive. So, Ellen is accessing a vaccine in New York that’s showing promise in reducing the chances of relapse. Her family have raised enough money and more to pay for the treatment and we are currently waiting for end of treatment scans to show Ellen has no evidence of the disease.
Claire adds: “We’re so grateful to all of Ellen’s doctors and nurses and all the other staff at the hospital who’re all working so hard to try to rid her of this horrible disease. If we’re fortunate enough to get Ellen into remission at the end of her treatment, then we hope to do everything we can to try to stop this cancer from returning. We just want to give her the best chance possible to grow up and have a normal childhood again.”
Ellen initially did really well with her potty training in August 2017, but she suddenly started to suffer from constipation. Her parents took her to the GP who said that this was a common complaint in children when toilet training and it should rectify itself. But by Halloween, Ellen was rushed to A&E in a lot of pain, where she was diagnosed with a kidney infection and given antibiotics. It seemed to help initially but then she got worse again.
Mum Claire says: “A few days before Christmas Ellen still wasn’t her usual wee self. We managed to get an appointment with our fantastic GP, who thought Ellen probably had another kidney infection and gave her more antibiotics. She also told us to get Ellen’s bloods done.”
A few days later, the GP rang back to say she wanted Ellen’s bloods repeated, and an ultrasound of her tummy to check her kidneys. Ellen’s ultrasound scan was on 29th December 2017, at which point the radiologist said she wasn’t happy with the results. The New Year passed in a blur for the family. On 2nd January 2018, Ellen had an MRI scan in the Royal Belfast Hospital for Sick Children. The oncologist came out during her scan to say to her parents that while they would have to wait for biopsy results to be sure, he was fairly certain that Ellen had neuroblastoma. The next day she had surgery to insert her central line, a biopsy of her tumour, a lumbar puncture and a bone marrow biopsy.
Claire adds: “We were devastated to learn that the cancer had spread to her bone marrow and her bones. Our baby had stage 4 high-risk neuroblastoma.”
Ellen had such a tough time in those first few months with infections after every chemotherapy cycle, so she spent most of her time in hospital on antibiotics. She suffered with constant nosebleeds because her platelets were so low. She lost a lot of weight early on in her treatment so needed to be fed by tube. She vomited the feeding tube up frequently, which she found so distressing, and her mouth and digestive tract were full of ulcers.
Thankfully the disease responded to the chemo, and Ellen had her surgery to remove as much of her tumour as possible on 23rd May 2018. It was wrapped around many blood vessels in her tummy which made the surgery difficult and long, with Ellen spending 13 hours in theatre. She then spent a week in intensive care because she had fluid on her lungs and sepsis.
Claire says: “We felt so helpless watching her hooked up to so many machines which were keeping her alive.”
Ellen has also completed high dose chemotherapy, stem cell transplant, radiotherapy and is now approaching the end of her five cycles of immunotherapy, when we all hope she will have no evidence of the disease. She will then hopefully access the Bivalent Vaccine clinical trial at Memorial Sloan-Kettering Cancer Center in New York, which is showing promise in reducing the chances of relapse.
Ellen’s fundraising campaign
Ellen’s family have raised an astonishing amount already and her campaign has been backed by thousands of amazing supporters. They have raised enough for her to access treatment in New York that could keep her cancer-free. Her campaign will remain open for donations, in case she needs to access further treatment not available on the NHS, either to keep the cancer from returning or clear the disease if it does come back.
Please support Ellen’s campaign, and give her family hope.
How you can help
There are many ways you can help Ellen: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge; or simply following and sharing Ellen’s story through her Facebook page.
Download our free Ellen resources (below) to support your fundraising, and click HERE for even more resources, including fundraising ideas, templates and guidance.
You can make a donation via this page, or if you’d prefer to text donate, text ELTR77 and your amount £1 – £10 to 70070. If you’d like help supporting Ellen’s campaign, please get in touch with the fundraising team on 0207 284 0800 and firstname.lastname@example.org.