Page 41 - The Exceptional Harley Fetterman

THE EXCEPTIONAL HARLEY FETTERMAN

adventured off to the San Antonio Rodeo, where much to Harley's
pleasure they were able to see Hilary Duff perform again. He was
ready and eager to participate in several fair concessions and rides
like the Bouncing Bungee Cord Exhibit where, strapped into a safety
harness, Harley stylized his own free form high bounces and spinning
flips. What a joyful, carefree adventure for mother and son. To make
it official, Harley's second “Off Treatment” party was held at Austin
th
Children's Hospital March 17 , 2006 to celebrate with family, friends,
and hospital staff where he was presented with his second “Courage
Award” trophy.
He continued to have MRI scans every 3-6 months to make sure all
was well. The MRI's continued to show no change in Harley's tumor.
However, the radiologist started reporting the appearance of a cyst
around the tumor that began to increase in size. So, Harley and his
parents went to visit the new pediatric neurosurgeon, Dr. George, who
reassured them that the cyst was not a dangerous size, but this new
situation needed to be monitored. By October of 2007, the cyst had
doubled in size and Harley started seeing stars in the sky during the
day which suggested something was pressing on his optic nerve.
Other troubling health symptoms included loss of weight (nearly 20
pounds which may have due to discontinuing steroid medication for
hormone treatment), and lack of growth (a year ago he was in the 95 th
th
percentile for his age and now he is in 50 ) which could indicate
something (tumor or cyst) was pushing on his hypothalamus. If
Harley's tumor “advanced” the oncologist warned that radiation
treatment, which frightened Harley, would need to be considered.
Doctors had avoided radiation because the tumor was too close to his
hypothalamus and might create hormone issues such as stunted
growth.

In December of 2007, all of Harley's doctors met together to
discuss all of Harley's medical issues and offer options for a plan of
action. They arrived at a consensus that Harley should have surgery to
place a shunt (tube) to drain the cyst around his tumor. Harley would
have preferred that they just have surgery to remove the cyst so that
he wouldn't have to worry about it ever again. But the neurosurgeon
thought a more conservative approach could take care of the issue.
Removing the cyst would be major surgery taking several days to

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