Just after his 3rd birthday, Ryder developed a limp and a low-grade fever. Over a stressful period of more than 5 weeks we took him to the GP eight times. Finally, we took him to the RCH, and they confirmed that Ryder has stage 4 high risk neuroblastoma.
By the time we took him to RCH, Ryder’s cancer had grown very aggressively. It had spread to every part of his skeleton, much of his soft tissue and in to his bone marrow. He was in pain, everywhere.
We now know that neuroblastoma is a 1 in 100,000 disease and most GPs will have never seen it even once within their career. It is almost exclusively a childhood cancer, known to be very aggressive and accounts for a disproportionate number of children’s cancer deaths.
Where we are now
After seven cycles of chemotherapy, keeping us in hospital for the better part of 6 months and causing permanent side effects including a chance for future cancers, hearing loss and infertility, we can however say gratefully that he has responded well to the chemo. But we are not done. Treatment for neuroblastoma is aggressive to match the cancer and ‘frontline’ (initial) treatment – we have radiation and immunotherapy to go) lasts for anywhere between 12 and 18 months.
Unfortunately, while reaching remission after all this treatment is very likely (in Ryder’s case), neuroblastoma is a notoriously recurrent cancer. Even with this good response he has a 50% chance of relapsing, possibly even while still in the latter part of his treatment (we’ve been given one opinion that Ryder may be “as low” as a 30% chance to relapse, but this is an opinion only). Parents of neuroblastoma children live in fear of every sore limb, every fever, every suspicious symptom, and are terrified of what they might hear with each new scan.
Preventing a relapse
With Ryder’s treatment going well we are therefore turning our thoughts and worries to what comes next. If he relapses, not only do we face months of fighting again, many of our options will have been ‘used up’ and we will be starting to grasp at straws. Depending on your source, children who relapse with neuroblastoma have between a 0-10% long term survival rate.
There are no further treatments or trials available in Australia to prevent NB children relapsing. Our wish is to access a trial ( https://www.mskcc.org/cancer-care/clinical-trials/05-075 ) at the Memorial Sloan Kettering Cancer Centre in New York, a hospital known worldwide as the specialists in treatment neuroblastoma. The trial is to test a vaccine given over 12 months that aims to help the body recognise and fight potential developments of more cancer. Initial data (published findings avilable on request) is showing a great deal of promise – significantly extending remission periods for children who have already relapsed and are therefore at a much higher risk. Many are still with us today.
Ryder is eligible for the trial and will be accepted if he has clear scans at the end of immunotherapy. Some scans can be done at RCH but the vaccine injections and bone marrow tests need to be done in New York. Costs for international patients to attend MSKCC begin at US$160,000 and go up from there.
Including travel costs we are needing to raise approximately US$235,000 (AU$300,000) to be sure we can access this – quite probably lifesaving – treatment.
We are seeking people to help by organising a fundraiser in Ryder’s name. Please contact us directly if we can assist with any information, photographs, etc to help with this.
Please consider donating blood. Click here to find out where: www.donateblood.com.au
Join our private group on Facebook to follow Ryder’s story.