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Karli Costley

  • Retinoblastoma

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Karli Costley is an 8 year old survivor of bilateral (heritable) retinoblastoma, diagnosed at age 3.  She was busy loving Elmo, the beach and cheerleading when suddenly her world was halted with one word: CANCER.  

Karli is the baby of 5 kids--the tough one, the fighter, the survivor but it would take all of these qualities and more to face this demon!

The doctors at Monroe Carrell Childrens Hospital-Vanderbilt felt Karli should have her left eye removed and possibly face systemic chemo for the other eye, to have the best chances for survival.  The doctor who was to remove her eye had other ideas.  Dr. Mark Melson had trained for a period at Memorial Sloan Kettering Cancer Center (MSKCC) in NYC and knew of a possible new treatment that could possibly save Karli’s eye.  The family began a journey far greater than anything they dared to imagine!

After 6 months of an investigative therapy called Intra-arterial Chemo (IAC) to her left eye and cryotherapy to the left eye X2 and right eye X1, Karli was told on March 3, 2009 that she was finally finished with her treatment and appeared free of active cancer!  

Karli would endure frequent follow-ups in NYC over the next several months until a July visit revealed a questionable "seed" in the left eye.  Karli then received over 48 hours of continuous radiation via a plaque that was sewn to her eye and then removed afterwards.  Karli's eyes have never required any further therapy, although Karli and her parents still travel to NYC 3-4 times a year for checkups.  Karli will never be considered "cured" as the bilateral retinoblastoma is a genetic defect and these kids are at a higher risk for secondary primary cancers.  

Karli's "trial" offered her and her family a HOPE that they thought did not exist!  They not only were able to salvage her eyes but Karli had a "spontaneous" reattachment of her retina (previously completely detached) and even has some limited vision in her left eye.  Karli's right eye has 20/20 vision.  Karli's results are nothing short of a medical miracle, but one that was made possible due to the latest advances in research at Memorial Sloan Kettering Cancer Center.  That same protocol is now a standard of care offered at many facilities around the US and across the globe!  

Today, 5 years later, Karli is a very happy, very active 3rd grader at W.A. Wright Elementary in Mt. Juliet, Tennessee.  She plays travel basketball and travel softball and the unknowing stranger would never guess what she has been through or the miracle it is that she is even able to play, much less excel.  Karli is an honor roll student and remains an inspiration to many childhood cancer families and adults as well as to her family and all that know her.  She is lovingly referred to as a little "firecracker" by many who know her well.

Karli definitely is a proof that some stories really do have happy endings and her story reinforces the fact that all of this fundraising and research money really does change lives for the better!!!  Thank you Alex's Lemonade Stand!  Keep up the hard work!!!

View a Fox News story that tells more about Karli's cancer and treatment here!

Visit Karli's CaringBridge site here!

Written by Amy Costley, Karli's mom
Updated: March 2014


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