Welcome to Burkley’s CaringBridge Site
Sign In to Show Your SupportHello everyone! Burkley had her 6 month MIBG scan today and we are so thankful to say she remains NED, no evidence of disease!!!
In other exciting news, the medication Burkley has been taking as part of a clinic trial for the last 18 months was recently FDA approved. We have known the medication as DFMO, but it is now marketed as IWILFIN. It is the first FDA approved medication to reduce the risk of relapse for pediatric neuroblastoma. Our amazing oncologist at MUSC, Dr. Jacqueline Kraveka, has been studying this medication for the last 14 years. Through the trial they have found this medication reduces the risk of relapse by more than 50% and boosts survival by nearly 70%. Burkley has been incredibly lucky to have had this medication and she will continue to take it until next summer as planned!
Thank you to everyone who has donated to MUSC for pediatric cancer research, your money went directly to Dr. Kraveka's lab-- the only pediatric cancer research lab in South Carolina. Thanks to you, neuroblastoma kids everywhere will be able to benefit from this medication!
Since I last posted over the summer, Burkley has begun Kindergarten and is thriving. She radiates joy to those around her. She is always making us laugh and teaches us life lessons that are wise beyond her years. She is pure love, happiness, hope and life. We are blessed beyond measure and full of gratitude.
Happy Holidays to all and wishing you a new year filled with love, happiness, hope and life as well.
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