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The Race for Hope - DC presented by Cassidy Turley raises funds to support innovative research initiatives and provide information for brain tumor patients and their families. This amazing event relies on the dedication and enthusiasm of individuals, families, teams, volunteers, sponsors and donors. Thank you for your support in helping us find a cure for brain tumors!
I may have told you about Sophie -- Steve Brown's daughter who has been battling brain tumors for several years. She is a truly a brave little girl!
I invite you to make a pledge on "my team" to support Race for the Hope and children like Sophia who are battling brain tumors.
Below is a short message from Steve with some information about Sophie.
Sophie was diagnosed with a brain tumor at the age of 2. She is currently in a phase-one clinical trial (phase one means scientists are still investigating if the drug is safe and if it works). It is an oral chemo but does require frequent blood work and hospital visits. Because the drug is a chemotherapy agent, Sophie is immuno-comprised and therefore gets sick a lot because her body can't fight off other infections.
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 is 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. This is the issue to address when the clinical trial is over, at month 24 (October 2014).
Because the drug is not FDA-approved, Sophie cannot restart the drug once she is off it. The remaining options are traditional intravenous chemotherapy (which is not as effective and very hard on the body) or possibly a different school and routine.
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.
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