Eleanor’s frontline treatment included chemotherapy, surgery to remove tumours and her right kidney, a stem cell transplant with high dose chemotherapy, radiotherapy, and immunotherapy. Eleanor had an incredibly tough treatment journey. Her main complication came after her stem cell transplant which affected her lungs so badly she had to be placed on breathing life support for nearly a week and her life was very much in the balance.
After overcoming hurdles and showing immense resilience, Eleanor had received clear scans in April this year showing she had no evidence of disease. To keep disease away we enrolled Eleanor in the clinical drug trial, Difluoromethylornithine (DFMO) a cancer pathway inhibitor. This is designed to increase long term survival for children with Neuroblastoma. We were enrolled in the DFMO clinical drug trial from April to July this year.
Unfortunately two weeks ago at Eleanor’s three month post treatment follow up scan, a new tumour was discovered in Eleanor’s right frontal lobe on her brain. She has now been diagnosed with a central nervous system neuroblastoma relapse. Our world has been turned upside down again. Our beautiful daughter has once again fallen victim to this relentless disease. Prior to her scan she was doing so well. She had just enjoyed her third birthday surrounded by her beloved family in Hobart. She was loving being back home in Hobart with her new baby brother George.
A week after the tumour was discovered, Eleanor had major brain surgery to resect it. The surgery was successful but the frightening reality is that some neuroblastoma cells remain in the central nervous system and require therapy to stabilise and hopefully prevent further spread. The treatment starts this week and includes chemotherapy and radiotherapy. Eleanor will need a new central drug line and nasogastric feeding tube as she will be unable to eat. This treatment will occur in Melbourne.
The all familiar nightmare has returned. We have again had to uproot our lives to live in Melbourne indefinitely. We have had to leave our jobs once again to focus on Eleanor. But this time it feels so much worse that our original diagnosis in January 2018. Back then we were naive and filled with hope of following a treatment path that most children respond to. Hearing horrendous stories of the unlucky children who would relapse was a reality, but we chose to focus more on being positive and thinking that would not be Eleanor. This nightmare now becomes the most sobering reality. Generally, children who relapse have an extremely low chance of surviving, let alone with an extremely rare relapse to the brain. Our hearts are filled with deep sadness.
If Eleanor’s disease remains stable she will be eligible for a clinical drug trial of 8H9 antibody that targets and attacks neuroblastoma cells in the central nervous system. The antibody therapy is the only hope to cure Eleanor’s relapsed neuroblastoma. Central nervous system relapse is incredibly rare and traditional chemotherapy and radiotherapy is used as palliative treatment. We want to cure Eleanor and give her the best chance of living a full and happy life. The 8H9 protocol is deemed the best, and possibly only chance to achieve this. The 8H9 protocol is not available in Australia, only in hospitals in the US and Barcelona, Spain.
Please support Eleanor in reaching her goal to receive the 8h9 antibody. This treatment is available at three hospitals in America and we desperately need to raise the funds to get her there. For an entire neuroblastoma central nervous system relapse protocol in New York, we have been quoted $2,200,000. Yes that’s correct, two point two million dollars! Completely unattainable. We have found two other hospitals that are more affordable. We need to raise $300,000 to get Eleanor this life saving treatment. We are unable to work and really need your support to help us reach our goal. We are begging everyone to please help our Eleanor fight for her life.
Note: We are awaiting a final quote and decision on funding from the drug company and hospitals that are running the trial, we are hoping that some of the costs may be covered by the drug company. Until we know that, we have chosen the lower of the two quote amounts to fundraise for as we can't wait till the end of this round of Australian treatment to find out if Eleanor will get into the trial to then suddenly raise money. Any money not needed directly for this 8H9 protocol trial will be used to cover the time off work, travel and other expenses that the family is going to need over this period. If there is any leftover money that isn't needed we will donate to children’s cancer research to try and help other families embarking on this terrifying journey.
This fundraiser was set up by Stuart Gillies on behalf of Robert, Jacqui, Eleanor and George Oakley. All fund are being sent directly to their account.
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