In July 2017, Nixon was diagnosed with stage 4 High Risk Neuroblastoma Cancer MYCN amplified. It was discovered that the cancer was throughout his entire abdomen (from his pelvis to his diaphragm), spots on his chest, right arm bone and both thigh bones.
We were told he had a 55% chance of surviving the next 5 years. He had 20 months of treatment including 6 months chemotherapy, 12 hour major abdominal surgery where he was then intubated in ICU for 4 days following surgery, two stem cells transplants with high dose chemotherapy being isolated in hospital for a month each time, 12 rounds of radiation and 7 months of immunotherapy. On top of this he had 3 ICU admissions, a number of bacterial infections in his blood, had a central line in his chest for 18 months, 33 blood product transfusions, 25 general anaesthetics, 20 months being fed through a nasal gastric tube and 289 days in hospital.
In March 2019, Nixon finished his treatment plan and his scans were clear.
In September 2019, Nixon relapsed. Our oncologist said that his chance of surviving the next 5 years is very little. He started a trial of combined chemotherapy and immunotherapy. The treatment is extremely painful as it attacks the nerves throughout the body. Imagine having a tooth ache but that feeling is throughout your abdomen, arms, hands, feet and legs. Because of this he is dosed up on double strength morphine/fentanyl and gabapentin. This treatment will continue until mid-October 2020 if there are no delays or complications.
Nixon is at high risk of again relapsing. If he relapses again after this treatment, he will have a 0-2% chance of surviving. We simply cannot take this chance.
Nixon's only hope for a cure is to get him to the Memorial Sloan Kettering Cancer Centre in New York and participate in a vaccine trial against neuroblastoma. This trial is a course of 7 vaccines over 12 months. The trial has been ongoing for over 10 years! But is not available in Australia.
The purpose of the trial is for the body to make antibodies against the 2 antigens in the vaccine, those antibodies might also attach to neuroblastoma cells because a lot of each antigen is on neuroblastoma (and very little on other parts of the body). Then, the attached antibodies would attract the patient's white blood cells to kill the neuroblastoma. Stopping a relapse from occurring. This is Nixon's best chance of survival. As parents, we need to do everything we can to help our son survive.
The costs associated with this vaccine trial is AU$350,000.
A link to the trial can be found here. Please note that the trial states the estimated date of completion is May 2020 however I have been in contact with 2 of the head oncologists from MSK Cancer Centre and also a head researcher for the trial. All have confirmed there is no end date for the trial and they will continue registering patients after May 2020:
https://clinicaltrials.gov/ct2/show/NCT00911560
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