Gerard Schafer:  

Hello Everyone: It is now almost three years since my 7 year old son, Jake, was diagnosed with neuroblastoma cancer. He is the pride of my life, the only thing that is important to me at this time. Jake has gone through all of the standard care cancer treatments in the Ontario Health Insurance Plan and completed these in November of 2010. At that time, he did not respond to any of the treatment protocols and our only option was "maintenance chemotherapy" which was a tough pill to swallow at that time. Jake's favorite theme song was "never say never" as sung by Justin Bieber and we took that mantra home with us and refused to give in to the disease. We then took him to Boston for an MIBG iodine treatment which is an injection of a nuclear isotope. This treatment seemed to keep the progression of the neuroblastoma at bay for almost 9 months, but in November of 2011, his images showed a 10 fold increase in the number of lesions found in his bones. In January of 2012, he was given a powerful dose of chemotherapy and then went on to participate in an immunotherapy trial at Sick Kids in Toronto. It was an ugly trial that placed Jake in intensive care several times and then a tumour in his spine crippled him and took him off the trial. He went through radiation at Princess Margaret Hospital which reduced the tumour and minimized the damage of the paralysis. From that point, we found Jake's resolve to not give up inspired us to continue to seek treatments that were available in the United States or elsewhere in our desperation to find a cure-find the chemo drug-that would save him. This led us to Grand Rapids Michigan where a Canadian Doctor, Giselle Scholler, was administering phase trials that were designed to test whether the neuroblastoma was treatable using a drug called Nifurtimox. Imaging in July 2012 showed continued progression of the cancer in his bones, but not his organs. Two small tumours had appeared on his rib cage and Doctor Scholler advised us to contact the National Institutes of Health in Bethesda Maryland to see if he quallified for the "personalized cancer treatment trials" sponsored by the National Cancer Institute. We took Jake to Bethesda and they agreed to biopsy the tumours on his rib and analyse the tissue using Dell Computer programs that examined the RNA in the cell and cross referenced the findings to any and all drugs used-past or present-to treat the protein of the cell. Lo and behold-despite the prediction in Toronto that the same drugs would be recommended as what he had already been given-several new drugs came up on the screen to treat the cancer. Jake went on to two months of treatments and was scanned again for results. To our absolute relief, his scans showed a response to the drugs he was taking-the tumours had softened and were reduced by one third the size of the original scans. In spite of a large burden of disease in his bones, everyone was encouraged by the success of the scans. Jake appeared much stronger than he was when he presented in September of 2012. Subsequent treatments began after the scans, however in February 2013, more tumour growth by the spine appeared and, once again, he underwent radiation to reduce the pressure on the spine and avoid further paralysis of the body functions and limbs. This radiation also resulted in Jake having to be taken off the trial. Fortunately, Doctor Sholler was leading ...Expand for more