E AST O REGONIAN
WEEKEND, JaNuary 26, 2019
EO Media Group photos/Natalie St. John
Casey Harrell helps her daughter eat a bowl of chicken soup. The loss of muscle control caused by her cancer sometimes make it hard for Dylan to eat. The sock on her
left arm covers a port that allows doctors to give her IV medications and draw blood without giving her constant injections.
TINY WARRIOR
SMALL TOWN UNITES FOR PRESCHOOLER IN THE FIGHT OF HER LIFE
By NATALIE ST. JOHN
EO Media Group
T
here is a tiny walker
in Casey and Jeff Har-
rell’s living room. It’s
an unwanted but con-
stant presence in their
lives, which makes it a pretty
good metaphor for their daugh-
ter’s illness.
In august, 4-year-old Dylan
Harrell received a crushing
diagnosis: diffuse intrinsic
pontine glioma, or DIPG, a
type of childhood brain cancer.
To date, the disease has had a
100 percent fatality rate. The
Harrells of Seaview, Wash-
ington, are devastated, but not
without hope. Bolstered by
support from family and com-
munity, Jeff, Casey, Dylan
and her big brother Mason are
fighting the disease every way
they know how.
Over the summer, Dylan’s
day care teacher noticed that
her left eye was turning in.
Their doctor told them to put
an eye patch on her stronger
eye, but it kept getting worse.
Soon, her other eye was turn-
ing in too. She started having
problems with balance. In July,
she started throwing up.
“It became very clear that
something’s going on here,”
Casey recalled. a family friend
helped fast-track an appoint-
ment at the Casey Eye Institute
in Portland.
“We went in for an eye
appointment and had the big-
gest bomb dropped on us,”
Casey said.
“I can remember the doctor
going, ‘Let’s chat.’”
The eye doctor sent them to
the emergency room at Doern-
becher Children’s Hospital for
a basic brain scan. Doctors said
they could see something on
the pons — a small, but essen-
tial, part of the brain stem.
“We still had no clue what
that meant,” Casey said.
Dylan was admitted to the
hospital and scheduled for a
full MrI the following day.
The Harrells knew they were
about to receive terrible news
when a doctor called them into
LEFT Jeff Harrell jokes around with Dylan on a too-rare lazy Sun-
day afternoon.
ABOVE There is currently no cure for DIGP, a rare type of child-
hood brain cancer. However, the Harrells are trying a variety of
traditional and alternative treatments. Dylan has to take dozens
of pills a day.
a room to talk. The neuro-on-
cologist cried while telling
them Dylan’s diagnosis, but
no amount of empathy could
soften the blow.
“For lack of better words,
I feel like they put you on the
death march,” Casey said.
“They told us to just go
home and enjoy our time,” Jeff
added.
The Harrells were dumb-
struck at first. How could their
sassy, rambunctious, smart,
athletic daughter be so sick? at
the time, Dylan was learning
to ride a bike. She had strong
opinions on fashion, and on
how her big brother should
behave. She thought burps
and farts were hilarious. How
could a child with so much life-
force just fade away?
Further tests and her wors-
ening symptoms quickly
forced them to come to terms
with DIPG. Dylan may have a
less aggressive form of the dis-
ease. She has already had more
time than many DIPG patients
get, but in September, she
began having difficulty walk-
ing. By October, she couldn’t
walk unassisted, and she had
developed hydrocephalus —
a buildup of fluid in the brain.
When doctors treated the
hydrocephalus, they also took
a biopsy. The results showed
that Dylan had a type of tumor
known as an anaplastic astro-
cytoma. It was a “grade three”
on a scale of one to four. The
battle started in earnest.
‘A horrific few days’
Dylan underwent the first
of 30 radiation treatments on
Oct. 18. The treatment caused
severe inflammation and vom-
iting and landed Dylan in the
intensive care unit. after a sec-
ond night in the general ward,
doctors sent her home with
a new prescription for a ste-
roid drug that controls inflam-
mation but causes severe side
effects.
“It was a horrific few days,”
Casey said. Dylan’s bad reac-
tion had major implications,
because radiation is the only
treatment proven to alleviate
DIPG symptoms. Fortunately,
Dylan did much better when
they restarted treatment a few
days later. In fact, she is the
youngest Doernbecher patient
to ever undergo radiation with-
out sedation. Her ability to
lie still inside the MrI-like
machine means treatments take
15 minutes instead of a couple
of hours. It also means Dylan
doesn’t have to go through the
stress and risk of being sedated
five times a week.
For Jeff and Casey, both
pharmacists, the limitations of
western medicine have become
very personal. Jeff reads
research papers, consults with
other DIPG parents and calls
experts all over the world. He
recently attended the first-ever
summit on DIPG in Washing-
ton, D.C. But help is hard to
come by. There are treatments
being tested in other countries
that haven’t made it through
the united States’ byzantine
approval process. There are
promising procedures doctors
won’t try and insurance com-
panies won’t approve because
they don’t want to be sued if
things go awry, and experi-
mental drug trials for which
Dylan doesn’t qualify. One
of the most promising can-
cer-fighters — cannabis — is
still illegal under federal law.
Jeff respects and appreci-
ates Dylan’s medical team, but
finds it maddening to be told
again and again that radiation
is the only option. To him, it
feels like doctors are floating
every single DIPG child down
the same river, knowing it
leads to a giant waterfall.
“If you failed in any other
field like that, you would be
fired,” Jeff said. “They don’t
have that answer for us. That’s
the thing we talk about every
time we go into the doctor’s
offices. They look at us, and
they cannot give us an answer.”
The Harrells are frank about
the fact that, as the part-owners
of a successful chain of phar-
macies, they have some advan-
tages in the fight against DIPG.
Their business partners and
employees have taken on most
of the day-to-day work, mak-
ing it possible for them to work
part time, mostly from home.
an employee got a friend to
See Tiny warrior, Page C6