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THE DAILY ASTORIAN • FRIDAY, JANuARY 18, 2019
Photos by Natalie St. John/Chinook Observer
Dylan plays with her dolls.
T INY W ARRIOR
Preschooler in the fight of her life
By NATALIE ST. JOHN
Chinook Observer
S
EAVIEW, Wash. — There is a
tiny walker in Casey and Jeff
Harrell’s living room. It’s an
unwanted but constant presence in
their lives, which makes it a pretty
good metaphor for their daughter’s
illness.
In August, 4-year-old Dylan Har-
rell 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 Har-
rells are devastated, but not with-
out hope. Bolstered by support from
family and community, 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 get-
ting worse. Soon, her other eye was
turning in too. She started having
problems with balance. In July, she
started throwing up.
“It became very clear that some-
thing’s going on here,” Casey
recalled. A family friend helped fast-
track an appointment at the Casey
Eye Institute in Portland.
“We went in for an eye appoint-
ment and had the biggest 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 Doernbecher
Children’s Hospital for a basic brain
scan. Doctors said they could see
something on the pons — a small,
but essential part of the brain stem.
“We still had no clue what that
meant,” Casey said.
Dylan was admitted to the hospi-
tal 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
a room to talk. The neuro-oncolo-
gist cried while telling them Dylan’s
diagnosis, but no amount of empa-
thy 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 dumbstruck
at first. How could their sassy, ram-
bunctious, smart, athletic daugh-
ter 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 worsen-
ing symptoms quickly forced them
to come to terms with DIPG. Dylan
may have a less aggressive form
of the disease. She has already had
more time than many DIPG patients
get, but in September, she began
having difficulty walking. By Octo-
ber, she couldn’t walk unassisted,
and she had developed hydrocepha-
lus — a buildup of fluid in the brain.
When doctors treated the hydro-
cephalus, they also took a biopsy.
The results showed that Dylan had
a type of tumor known as an ana-
plastic astrocytoma. It was a “grade
Dylan’s preschool teacher, Jeri Wilson, provides occasional respite care. When she comes to visit, she bring’s Dylan’s
favorite foods.
three” on a scale of one to four. The
battle started in earnest.
Dylan underwent the first of 30
radiation treatments on Oct. 18. The
treatment caused severe inflamma-
tion and vomiting and landed her in
the intensive care unit. After a sec-
ond night in the general ward, doc-
tors sent her home with a new pre-
scription for a steroid drug that
controls inflammation but causes
severe side effects.
“It was a horrific few days,”
Casey said.
Dylan’s bad reaction had major
implications, because radiation is
the only treatment proven to allevi-
ate DIPG symptoms. Fortunately,
she did much better when they
restarted treatment a few days later.
In fact, she is the youngest Doern-
becher patient to ever undergo radi-
ation without sedation. Her abil-
ity to lie still inside the MRI-like
machine means treatments take 15
minutes instead of a couple of hours.
It also means she doesn’t have to go
through the stress and risk of being
sedated five times a week.
‘They cannot give
us an answer’
For Jeff and Casey, both pharma-
cists, the limitations of western med-
icine have become very personal.
Jeff reads research papers, con-
sults with other DIPG parents and
calls experts all over the world. He
recently attended the first-ever sum-
mit on DIPG in Washington, 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 promis-
ing procedures doctors won’t try and
insurance companies won’t approve
because they don’t want to be sued
if things go awry, and experimental
drug trials for which Dylan doesn’t
qualify. One of the most promising
cancer-fighters — cannabis — is
still illegal under federal law.
Jeff respects and appreciates
Dylan’s medical team, but finds
it maddening to be told again and
again that radiation is the only
U.S. Rep. Jaime Herrera Beut-
ler, the mother of a child with a
rare, usually fatal disease, invited
the Harrells to visit her family in
Camas. They took Dylan to their
church, where their pastor prayed
over her.
“It was really, really heartfelt,”
Jeff said.
Herrera also used her connec-
tions to help the Harrells get access
to an experimental drug.
‘I am not into that’
Jeff Harrell jokes around with
Dylan on a too-rare lazy Sunday
afternoon.
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 doctors’
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 suc-
cessful chain of pharmacies, they
have some advantages in the fight
against DIPG. Their business part-
ners 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 loan them
a condo near the Portland hospital
complex where they spend much of
their time.
After learning about a promising,
but wildly expensive sea cucumber
extract, Jeff paid $900 out of pocket
for the first month’s supply. Later,
he was able to get more of the med-
icine by enrolling Dylan in a study.
They are also able to pay for can-
cer-fighting cannabis extracts that
are not covered by insurance —
something Casey says families with
less income and community support
wouldn’t be able to do.
Still, the costs of even standard
treatments are astronomical and car-
ing for a sick kid can be overwhelm-
ing. On Mondays, family members
look after Mason while Jeff, Casey
and Dylan go to Portland. On top
of daily radiation treatments, there
are appointments with the neurolo-
gist, the oncologist, the naturopath,
the cannabis consultant, the physical
therapist and the occupational ther-
apist. Dylan has been a very good
sport, her parents say, but certain
aspects of her care are major ordeals.
Once a week, her providers have to
change the sticky dressing that cov-
ers the IV port in her left arm.
“I am not into that,” Dylan said.
She takes dozens of pills a day.
The sea cucumber extract is an
unappetizing green-gray slime. It’s
tasteless when mixed with juice,
but Dylan, a skilled and determined
haggler, tries to negotiate her way
out of every dose.
Steroids can cause wild mood
swings, extreme hunger and crazy
sleep schedules. It’s not unusual for
Dylan to wake up every two hours,
or want a full meal at 3 a.m.
On a Saturday afternoon in
mid-November, Mason played
calmly while his parents coached
Dylan through a steroid-induced
tantrum. He “is used to it,” he said.
Family members and friends reg-
ularly invite Mason to spend time
with them. It provides some much-
needed normalcy, but his parents
still see flashes of anger as he comes
to terms with the changes in his life.
“I think it’s hard for an eight-
year-old,” Casey said. “He gets the
big picture, but then it’s still hard
when she’s getting the attention, lots
of gifts.”
Even adults sometimes feel too
overwhelmed by grief and fear to
talk with the Harrells. They say they
understand.
“This is not something that hap-
pens every day, you know?” Jeff
said. “You can talk about breast can-
cer. You can talk about prostate can-
cer and skin cancer. Those roll off
your tongue like household names.
But childhood brain cancer? People
run.”
Others have gone out of their
way to help the family. When the
news hit social media, community
members began selling bracelets
and organizing fundraisers. People
bring gifts and meals. They paint
rocks and leave them in the drive-
way for Dylan to find. They write
heartfelt emails and provide free
childcare. DIPG parents from across
the country get in touch.
“There’s times in business when
I’ve been abrasive. Those people
that I’ve had not-perfect relation-
ships with are people that I will do
business with and support the rest
of my life because of what they’ve
done for us,” Jeff said.
“People who barely know us
check in every week to see how
we’re doing,” Casey added. “It’s
been amazing.”
‘We aren’t giving
up hope’
These days, Casey and Jeff shrug
it off when one of the kids chips the
paint or breaks a dish. If they see a
fight brewing over a bowl of snacks,
they pour another bowl.
“The little things don’t matter
anymore,” Casey said.
In a house where someone has
DIPG, even little victories are big —
such as when she can to eat unaided,
take a couple of steps with her
walker and chat as she dresses her
Barbies. The radiation honeymoon
is working, for now. Her sense of
humor is coming back.
Her good streak brings Casey
and Jeff gratitude and joy, but it’s
bittersweet. They know it will prob-
ably end, and they don’t know
when. They find themselves check-
ing constantly for returning symp-
toms, watching her while she sleeps
to make sure she’s still breathing.
“You feel like you have this pres-
sure in your chest, almost like a heart
attack,” Jeff said. “It’s like you have
trouble breathing. It’s always there.”
Regardless of the outcome for
Dylan, the Harrells say they’ll push
for a cure and advocate for DIPG
families for the rest of their lives.
They hope, eventually, to start a
foundation that would help families
cover the costs of things like travel
and non-traditional treatments.
They want to repay the kind-
ness people all over the world have
shown to them. For now, they’re
squarely focused on making Dylan’s
life as good as it can be, for as long
as possible.
“We aren’t giving up hope,”
Casey said. “We don’t want to be
the statistic.”
Follow Dylan’s progress on
Facebook at bit.ly/dylan-harrell