M
ack is a boy in motion. He
runs and jumps and tumbles
as much as any 9-year-old.
Mack is also a cancer
survivor and amputee, but that becomes
an afterthought in his day-to-day
activities. He employs his “robot leg,”
as his brother and sisters call it, to
play in a community basketball league,
lead the line to lunch at
school, and explore the
neighborhood around his
home in a small town in
East Tennessee.
Mack runs everywhere.
“He doesn’t walk anywhere
anymore,” his mom, Amanda,
says. “If we don’t break the
prosthetics, we outgrow them.
The prosthetic place has a
warranty on them now.”
But at age 6, Mack made a
decision that would determine
if he’d ever run again. His
leg hurt. The discomfort was
initially dismissed as growing
pains. But by the time of his
basketball physical for the
fall 2014 season, a knot had
developed on his right leg.
Mack ended up in a hospital
bed for a month. Based on
MRI results, doctors near the
family’s hometown treated
him for a bone infection.
It was nearly Christmas when they
found out that the original source of Mack’s
leg pain was Ewing sarcoma, and not a bone
infection at all.
“We heard of childhood cancers, but we’d
never really heard of Mack’s cancer,” Amanda
explains. Ewing sarcoma affects only 200
children and teens in the U.S. each year. “We
started researching it right away. We always
heard that St. Jude Children’s Research Hospital
is the best place for children’s cancer, so we
didn’t really question the referral when we got
it. St. Jude started that night trying to make
him better. That just shows how much they care
about the kids there.”
St. Jude has a team of experts who perform
limb-sparing procedures in children with bone
tumors such as Ewing sarcoma, but in some
cases amputation is necessary to ensure the
tumor is completely removed. Mack’s parents
were hopeful their choice would provide his best
chance at survival, and a more active life.
Even days before his surgery, the team was
undecided.
St. Jude’s approach to Patient Family-Centered
Care underlines the importance of open
communication between the family and the care
team, empowering Mack and his parents to
weigh in on such a life-altering decision.
“We talked to Mack about it, even though he was
only 6,” recalls Amanda. “We really left it up to
him and went over both surgeries and, in the
end, he accepted it before we did. He said, ‘Mom,
it’s sick—just chop it off. After this leg is gone I
can run again.’ He, his dad and I knew this was
the best for him, but deep down I was so sad for
him.”
Mack is curt when asked about his leg: “They cut
it off because of cancer.” Even at 9 he refuses
this as his main storyline. It is part of him but it’s
not him.
“The first thing I wanted to do was play
basketball when I got out of surgery,” Mack says
now. Less than 24 hours post-amputation, he
was ready to take his first steps. The moment
was captured on video.
Hooked up to every kind of monitor imaginable
and still an inpatient at St. Jude, Mack walked
around his own hospital bed in disbelief at
his accomplishment. “I’m doing it?” he asked
in a small voice. His care team and parents
surrounded him with hoots of encouragement
and admiration.
Stories like this one provided the impetus for the
United States Pickleball Association (USAPA) to
align pickleball’s governing body with St. Jude
Children’s Research Hospital. Through various
tournaments and fundraising activities, more
than $80,000 has been raised and, in turn,
donated to St. Jude. •
To read more stories like Mack’s, visit
stjude.org/inspire.
SEPTEMBER/OCTOBER 2019 |
MAGAZINE
35