Team Sophie Bear
While she does still have some "active” tumor spots in various parts of the brain (unfortunately her tumor spread to other parts - most brain tumors do not) the big tumor is pretty much inactive on the MRI. From a scientific point of view this is considered a success because of 1) shrinkage in primary large tumor; and 2) stability in smaller tumor "spots.”
The drug is of course not without side effects, both known (for example, nausea) and unknown (how this agent will change her cell development in the long term). The next question was what to expect when Sophie gets off the drug - will the tumor stay small, or once the agent is not in her system, will it grow again. Now, two years off-- we are enjoying chemo free life and learning to deal with the sequalae. We do MRI's every 6 months to watch the tumor and ensure it does not grow.
The next MRI will be in June and if everything is still dormant, Sophie will continue with no chemo. Please continue to recruit others and share her story as we hope that this is the beginning of something exciting for all who battle this disease.
Sophie's family is tremendously thankful for the opportunity to be a part of this clinical trial, while at the same time understanding the risks involved. We are all hopeful that there will be more pediatric-specific brain tumor trials in the future, and thank you for contributing to this very important cause.