Researched Treatment Proposal

Siqi Chen shares how he became deeply involved in researching treatments for his daughter's rare brain tumor.

"My daughter was diagnosed with a rare brain tumor last September, and we've been doing everything we can to find new treatments because it's so rare. Even the last time we met with our primary care team, they were proposing two particular paths - one involving pretty aggressive surgery and radiation, another involving a specific drug. I proposed a third path, and they were discussing it. These were neurosurgeons and clinicians. They came back a week later and said, 'Actually, your path is better.'

The reason I was able to do that is because this disease is so rare, I am more knowledgeable about the disease than anyone in the room because they have to study 50 different cancers. When you have a rare disease, the amount of research and data and treatments available is just bad because you need to have enough critical mass for the research to be worth it.

Our clinician was excited to have a partner who seems well informed and is willing to think outside the box. I straight up said I do not care what the standard of care is, I think the standard of care is crap. And she basically said, 'Yeah, I think so too, I just can't say that.'"