Now 17 years old, Jenna is a survivor of childhood cancer, earned a black belt in karate, plays percussion in the “pit” of her high school marching band, and hopes to go to college to become a child life specialist. A decade and a half after going through chemotherapy and surgery removing her right kidney due to Wilm’s tumor, we are back in the midst of a season of surgeries.
We had had a consult with a specialist at the Cincinnati Eye Institute long on the books for our daughter, Jenna, but thought we’d just get him to take a look-see and that would be that. So we were somewhat unprepared for the news a year and a half ago that she would definitely require surgeries on each eye, probably in the next several months– otherwise she was sure to lose her remaining vision.
Our daughter has zero stem cells in her left eye which has been giving her trouble for a couple of years, and only 20% of the usual amount of stem cells in her right eye. The surgeries cannot be done at the same time and each procedure will require between six to 10 trips to Cincinnati, Ohio: some six hours away from our home in the mountains of western North Carolina. However, the specialist that will be doing the surgeries is the doctor who pioneered this procedure and his experience vastly outstrips any peer.
Jenna is legally blind and has just received a prosthetic iris in each eye during a rare surgical procedure that is still in the testing phase. She has an exceedingly rare condition resulting from a deletion in her eleventh chromosome. You can read about this genetic syndrome at www.wagr.org . Her best corrected vision is about 20/300, depending on what acuity test is used. The problems in her left eye have reduced her vision at times from 20/500 to 20/800.
Her first stem cell transplant is slated for March 2015. Through it all, Jenna has been not only brave but also cheerful. She is our ambassador of good will to the world. Her festive and indomitable spirit brings joy to everyone she comes in contact with– we are truly thankful and blessed with our “Trained Attack Lamb!”