Will was diagnosed with stage IV neuroblastoma in March of 2005 as a 7 month old baby boy. His parents were told that the he was incurable 18 months later after undergoing – and failing – every known curative therapy. As his tumor grew through high dose chemo his doctors came to the conclusion that his tumors simply would not respond. It was time to focus on – “How do you want your son to die?” vs. chasing impossible treatment options and not enjoying the time he had left.
However, other than all of the ineffective therapies we forced him to endure he was looking and doing just fine – so we took our cues from Will instead of the past experiences of his care team – and decided we’d keep looking and searching as long as we kept what was in his best interest as the #1 factor in every care decision. As you’ll quickly find out in the world of childhood cancer the #1thing can and often does change.
We travelled and met with all the neuroblastoma experts to see what there was for Will. In January and February of 2007 he received two infusions of high dose MIBG therapy, he then enrolled on a phase II clinical trial for a year before finally progressing once again. It was at this point in our journey where we transferred his care into the hands of an extraordinary researcher and clinician we had met while searching for answers. At the time Dr. Sholler was a clinician in Vermont and so that is where our journey in life took a unlikely yet wonderful u-turn. We had started funding her researcher before this point and once he progressed with a new tumor his chest and met with Dr. Sholler there has been no looking back.
He immediately went onto an off label drug combination which gave him an incredible quality of life for nearly 10 months. We then transferred to another off label combination for two months while awaiting the opening of a phase I clinical trial that we had helped to fund. After another incredible year of living life and starting kindergarten we enrolled in yet another phase I trial we helped fund. This was DFMO and we could not believe how incredible his quality of life was! He was playing baseball and hockey an soccer and was indistinguishable from his peers! He was one of the biggest kids in his class and he went on to take this drug for nearly three years. After his tumor was not longer active (PET scans were negative) we took the incredible step of taking him off tumor directed therapy for the first time since he was an infant.
And after being off of all treatment for over 3 years he is attending middle school, playing hockey and lacrosse and doing all the things we could have only dreamed about when he was just 2 and ‘incurable’.
He is the exception to the rule because he lived. Beat Nb’s mission is the make him the exception to the rule because he had to endure so much to finally be free from treatment and to prevent other survivors from having to battle all the late effects that confront kids like Will.