Page 244 - The Exceptional Harley Fetterman

JUDY K JOHNSON

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The family was encouraged when on June 6 , Harley was out of
ICU at Texas Children's Hospital and back in the BMT unit.
Unfortunately, this only lasted until June 12 when Harley was hastily
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rushed to ICU with nurses working relentlessly to save his life. He
lost a dangerous amount of blood within bad episodes of diarrhea.
Harley appeared to be stable but two days later the same intestinal
bleeding issues put Harley in another dangerous position. On June
17 , Harley underwent surgery to try and locate the site of intestinal
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bleeding but the bleeding site location was too far above his colon to
reach.
On June 19 , Harley and his family watched the National Braille
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Challenge Award Ceremony from Harley's hospital room. Harley and
his parents had previously set up and sponsored a new award, the
Harley Fetterman Excellence in Charts & Graphs Award which was
Harley's favorite Braille category. They watched the live online award
ceremony where Rachelle Zampella received this new award. This
made them feel as if they were a part of the National Braille
Challenge and they set a goal that Harley could be at next year's event
and be the one to hand out the award. That same day, Harley received
a second bag of Beth's stem cells with the hope that they would
engraft.

By the end of June, Harley was still in ICU to best monitor all the
IV's Harley was hooked up to, continuous dialysis, and ongoing
bleeding issues. He was hallucinating a great deal and sadly had
neuropathy is his hands and feet which meant he was unable to read
Braille, play guitar, or work with his iPhone and MAC Air—all the
things he loved to do. The family was hopeful with improving ANC
results after several days of blood granulocyte tranfusions.

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Harley's 18 birthday on July 2 , presented welcome reason for a
hopeful family celebration. Kevin posted this proud note on
Facebook:

“Congratulations, Harley Fetterman. Your government now
recognizes you as an adult. Eighteen years ago, you made your first
appearance (I was there), and now they say you are a man. Since I've
been along for the entire ride, I can assure any agency interested that

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