For the second time our world fell apart.
Our oncologist delivered this news to us in an airless room, the sadness showing in his eyes. We will never forget that day.
The rationale 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 on the 8th August to remove the tumour. Surgery was successful but the tumour was very aggressive and has likely left active cells around Eleanor’s body. Her new diagnosis is a central nervous system (CNS) relapse of Neuroblastoma.
Without life saving treatment, she is in dire trouble. Disease progression is quick. We, along with our oncology team have sourced the only and best treatment regime in the world. This week Eleanor has 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.
Our only avenue and hope is to enrol Eleanor in a CNS relapse trial in America, which uses antibody 8h9 to attack remaining cancer cells in the central nervous system. This is her only chance of survival. Australia has no official CNS relapse protocol/program as it is so rare. We need your help urgently to raise $300,000 to get Eleanor through her treatment in Melbourne and to travel to America to receive her lifesaving antibody.
We only have 10-12 weeks to raise the funds and get Eleanor into the trial. This is our only hope of curing Eleanor and we have received a few quotes to date for the trial – ranging from 300k to $2.2m AUD. Any Australian treatment course of action would only act to prolong her life for the very short term as part of a palliative care plan.
We have written just the facts above. Most of you would find this unimaginable. The toll on us is immense, but 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.
We have separated again from our family and friends in Tasmania, completely isolated and worried about infection risk to Eleanor. We are trying to give her the happiest life we can provide during this time. This sometimes means indoor play and arts and crafts while she is unwell. She loves animals and visiting the Zoo and we take her there as often as we can. Eleanor is also the queen of babycinos and we try to take her out for these often.
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.
Please help us in our fight for Eleanor.