Page 42 - The Exceptional Harley Fetterman

JUDY K JOHNSON

heal. Draining the cyst still seemed invasive but on a smaller scale
taking only about a day in the hospital to recover.

At this time, the good news was that Harley's doctors felt there was
no need for more chemotherapy. The bad news was that Harley was
still in a “wait and see” mode to see if draining the cyst would
alleviate his problems with weight loss, lack of growth, puberty and
eyesight issues. They hoped that draining the cyst would reveal if the
tumor has grown any. The surgery would take place during Harley's
Christmas break from school. Harley didn't seem worried about the
procedure but inwardly Beth and Kevin remained seriously
concerned. Beth confessed to feeling quite freaked out.

Thankfully, Harley's surgery went very well. He was very alert and
feeling good within hours of waking up. He felt bored and restless the
next day. Finally, late in the day, he got unhooked from the IV fluids
and monitoring equipment was allowed to leave his room. Harley
immediately ventured out to explore Austin's new Dell Children's
Medical Center where his surgery took place.

Harley and his family had become accustomed to scheduling
surgery during holiday school breaks. Two days before Thanksgiving
in 2008, Dr. George surgically removed, with Harley's positive
approval, the cyst around his tumor. At the time, there were no
concerns with his tumor, but the cyst had repeatedly caused draining
issues. This procedure would be a significantly more involved surgery
than the previous year. It would require a craniotomy which involved
incision between the lobes of his brain to cut out the cyst around his
tumor. But Harley, now ten years old, was so ready to be done with
this “stupid cyst” and its side effects. Continued concerns existed that
the cyst was pushing on Harley's hypothalamus and influencing his
lack of any growth in the last two years. Surgery went well but, in the
weeks following, Harley struggled with very low hemoglobin levels
and a particularly bad case of whooping cough

Just six weeks later, MRI results showed that Harley's cyst had
reemerged. It had been just 22 mm after surgery but now was back up
to 3 cm in size. Dr. George recommended more surgery to completely
remove the cyst and also remove a portion of tumor while avoiding
Harley's optic nerve (if severed would cause permanent total

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