In our many discussions with parents of children afflicted with brain cancer, perhaps the most telling are those of scientist parents who, like all other parents, are left to their own devices to try to save their children. Philip Tan’s son Xavier, who was a in his prime as a college athlete when diagnosed, is limited in his mobility and suffers other mentally debilitating conditions associated with complications from his brain cancer. Phil discusses with us in no uncertain terms:
a. the lack of awareness of childhood brain cancer among physicians causing delayed diagnosis and other complications
b. what neuro-oncologists offer as treatment options
c. the limited number of clinical trials available locally
d. how the family found the drug ONC201 off-trial, paying out of pocket,
and e, what alternative, complementary modalities they’ve used which appear to have been helpful to Xavier. Phil shares as optimistically as he can his hopes for Xavier’s improvement and comfort, but awareness of the probability of his approaching demise, foresees tragedy which no family should have to contemplate.
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