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
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:
(7 days ago)
Claudine & Ben
(11 days ago)
Janice’s Gospel Community
(18 days ago)
(22 days ago)
(22 days ago)
Corey Creed & Tiffany Jackson.
(22 days ago)
(28 days ago)
(29 days ago)
Kate & Richard Vines
(32 days ago)