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Connor's Story, as written by his mum Rhiannon
On February 13th 2014 our 3 ½ year old son Connor was diagnosed with Stage IV Neuroblastoma. He was treated at the Royal Children’s Hospital and Lady Cilento Children’s Hospital in Brisbane. His aggressive cancer treatment protocol included 5 rounds of intensive chemotherapy, major surgery, a bone marrow transplant, radiotherapy and 6 months of immunotherapy. We were away from our home for 16 months – most of this was spent in hospital – Connor’s 18 month old sister Isla was his only regular visitor due to the risk of infection. Thankfully Connor, now 7, is in remission and doing most things boys at his age should be doing. After missing all of Kindergarten and most of Prep he has progressed well and is about to start Year 3 at St Catherine’s Catholic College in Proserpine. Connor has many side effects from treatment including hearing loss. We take Connor to Brisbane every 3-6 months to have tests, scans and checkups with his oncologist and other specialists.
Neuroblastoma is the third most common type of childhood cancer after Leukaemia and brain tumours. It is the leading single cause of cancer deaths of children under 5 years old with less than half of the children diagnosed beating the disease. Unfortunately it is not very well known and as a result has received relatively little funding. It represents a disproportionate amount of all childhood cancer deaths – 15% although it represents only about 8% of all children diagnosed with a type of cancer.
There is currently no cure for relapsed Neuroblastoma patients – although there is clear potential to develop one as the new drugs are showing definite progress. Urgent funding is required to accelerate the progress of these new drugs.
To find a cure for Neuroblastoma, more research needs to be done and more scientists are needed – survival rates for aggressive Neuroblastoma have improved only slightly over the last 10 years due to lack of funding. Approximately 20 children will die this year in Australia from Neuroblastoma – a third of the survivors will have long term side effects from the treatments.
We know research can make a difference. Survival rates have changed for Leukaemia (ALL) from less than 30% 30 years ago to over 90% today due to research – some important discoveries having been made by Children’s Cancer Institute Australia (CCIA). 75% of proceeds will go to a designated Neuroblastoma research project at CCIA (for more information visit our website www.neuroblastoma.org.au)