About Neuroblastoma Family stories Family stories Eleanor's Story Our names are Rob and Jacqui Oakley. We are parents to three year old Eleanor and three month old George. Up until 18 months ago we lived in Tasmania, Rob working as a firefighter at The Tasmanian Fire Service and Jacqui as a secondary teacher Sacred Heart College. "All we want for Eleanor is a cure and then to take her home to the rest of our family well and able to live a normal and happy life, like she deserves. We want to see her go to her first day of school, learn to swim, play sports and go on holidays, things that we used to take for granted." - Eleanor's parentsIn January 2018 our 18 month old daughter Eleanor was diagnosed with Stage Four High Risk Neuroblastoma. She had been in an out of the Royal Hobart Hospital Emergency Department dismissed each time with a virus. In the end, Eleanor lost weight, stopped walking, talking and eating and we knew something was terribly wrong. Rob then found a hard lump on her right cheekbone. We refused to leave the Emergency Department until Eleanor was given a blood test. Once that was done we were admitted and an emergency ultrasound was performed, revealing a very large mass on her right kidney. "Our world fell apart. She was a very happy and healthy child up until this point." - Eleanor's parents Before Eleanor turned two she had a central medicine line inserted, a nasogastric feeding tube, countless general anaesthetics and procedures. Eleanor’s frontline treatment included five cycles of chemotherapy, surgery to remove her right kidney and adrenal gland (the tumour had caused irreversible damage to both), one cycle of high dose chemotherapy with a stem cell transplant which caused lung major complications which would see her in intensive care on life support for a week. Her life very much in the balance at that point. Eleanor then had radiotherapy followed by six months of immunotherapy. "No child should have to endure any of those treatments and no parent should have to witness it. We will never be the same again." - Eleanor's parents Eleanor’s neuroblastoma was complicated due to a gene amplification found in her tumour. If Eleanor relapsed she would have an extremely low chance of survival. We decided to enrol Eleanor in a clinical drug trial in Grand Rapids, Michigan to keep her disease away by shutting off an important cancer pathway. She used this drug from May through to July 2019. Just two days after Eleanor turned three, at her three month post treatment follow up scan, a new tumour was discovered in Eleanor’s right frontal lobe on her brain. For the second time our world fell apart. The rational is that all Eleanor’s treatment she had included her clinical trial drug did not penetrate the blood brain barrier and neuroblastoma cells have been laying dormant there until now. Eleanor had major brain surgery at the Royal Children’s Hospital, Melbourne to remove the tumour. Surgery was successful but the tumour was very aggressive and was likely to have left active cells around Eleanor’s body. Her new diagnosis is a central nervous system (CNS) relapse of neuroblastoma. Eleanor completed one round of chemotherapy, had a new central medicine line inserted, a nasogastric feeding tube put in and commenced craniospinal radiotherapy. Chemotherapy and radiotherapy will be ongoing for the next five weeks in Melbourne. Eleanor enrolled in a CNS relapse protocol in America, which uses antibody 8h9 to attack remaining cancer cells in the central nervous system as Australia has no official CNS relapse protocol as it is so rare. "No words can describe the toll it takes on Eleanor. Our baby, having to endure this, is unaware of the seriousness of her disease. We are devastated that she cannot live like a normal kid and enjoy her life. You all know Eleanor does everything with a smile but the coming weeks will be her toughest yet. She has already suffered hearing loss from chemotherapy and will now suffer developmentally with further radiotherapy to her central nervous system." - Eleanor's parents From August to October 2019, to treat her relapsed neuroblastoma in her central nervous system, Eleanor had: surgery to remove her brain tumour four weeks of radiotherapy to her brain and spine two rounds of chemotherapy and a second brain surgery to place a port for her only chance at cure, an antibody only available in America. "At the end of October we got the great news that Eleanor's treatments had worked and her scans showed no evidence of disease. This made her eligible to travel to Columbus, Ohio to receive her antibody." - Eleanor's parents In October 2020, Eleanor was eligible to receive the antibody in the states. However, 3 months of complications followed. Eleanor had to have her broken port fixed and replaced twice and endured two further rounds of chemotherapy to keep her disease at bay. This was absolutely heartbreaking for us to watch Eleanor go through. In early January 2021 we got the fantastic news that Eleanor still had no evidence of disease and her new port worked. She was therefore still eligible for her antibody and could travel to the US.Eleanor received her first dose on 22 January 2020. We were extremely relieved she could start her treatment. She received her second and final round in February. Eleanor then travelled back to to Melbourne to complete more immunotherapy and chemotherapy. Eleanor then had the opportunity to go on another trial and to receive an immunotherapy vaccine in New York. Eleanor has travelled to New York for her first dose and will need to return again next month for the next one. Hope for a cure - Update June 2021 Eleanor is now four and will turn five at the end of July 2021. She spent three months in New York City (Feb-May 2021) receiving immunotherapy as part of a clinical trial for children in remission and has three trips left. She will complete this treatment in February 2022. We hope that will be the end of her treatment. - Eleanor's parents More information Rob and Jacqui tell the full story of their journey in their personal blog Eleanor's Fight which you can find here. The family have generously shared their story for our EOFY 2020 Appeal.