HOPE FOR A MIRACLE
A sign is hanging above three-year-old Skylar
Maxson's bed. It's been there since she entered
Riley Children's Hospital in May with an
inoperable brain tumor known as a diffuse
pontine glioma.
The sign, printed in black on a white sheet of
paper, simply reads, "Where there is great
love, there are miracles."
Miracles are certainly what Skylar's family is
hoping for these days.
Skylar's grandmother and adoptive mother, Connie
Maxson, Monticello, is still in shock over her
little girl's rapid decline in health due to the
tumor.
The afternoon of May 15, Connie said she recalls
Skylar was sitting on her lap and had just
hopped off when it became clear something wasn't
right.
"When her feet touched the floor it was
like the floor disappeared. She was dazed. And
she had been walking and dancing around 30
minutes before it happened," said Connie.
By the time Skylar could be transported to Riley
from White County Memorial Hospital, she had
lost the ability to walk and talk, Connie said.
Things went from bad to worse when Skylar
developed breathing and swallowing problems as
well.
"It's a whole different life now,"
Connie said. "She was always smiling, just
her happy little self. She put my face in her
hands and said 'Mommy, I love you.' That's the
last time she talked to me."
A diffuse pontine glioma is a malignant tumor
that originates in the supportive tissue of the
brainstem. These tumors generally affect
children between the ages of five and nine
years, and girls and boys with equal frequency.
They are rapidly growing, which explains
Skylar's seemingly instantaneous reaction to the
tumor.
Symptoms include impaired walking, weakness in
arms and legs, inability to control facial
expressions, swallowing, chewing and eye
movements due to problems in the cranial nerve,
and headaches and vomiting due to increased
pressure on the brain.
Treatment for these tumors is limited to
radiation and experimental chemotherapy
regimens; however, the prognosis despite such
measures is bleak. According to information from
the Children's Hospital at Boston, children with
diffuse pontine gliomas live on average just one
year past diagnosis and 20 percent survive two
years. Skylar was given just six months to live
as of May, said Connie.
Amid the heartache hope remains, and her family
holds fast to the fact that Skylar is entirely
healthy save for the debilitating tumor. However
she has already endured more than 30 radiation
treatments, and the side effects of the steroids
she takes to keep the tumor and resulting
swelling from harming her brain.
"The doctors at Riley said only God could
give Skylar another day," Connie said.
"They've kept her alive but no child ever
lives from this. It's very rare and there's very
little research done."
More help is needed than what doctors can give,
said Connie's good friend June Daulton. Connie
is unable to work because of her medical
conditions, which include diagnoses of lupus and
multiple sclerosis. Also, because any money on
hand has been required for various things since
Skylar's illness struck, the family has lost
their home. Connie has also adopted Skylar's
brother, 11-year-old Tristan, and raised him
since he was three months old.
"You just never know when something like
this is going to happen," said June, of her
best friend and young Skylar. "Connie and I
grew up together; she's more sister than my
sister is so I'm just trying to help them anyway
I can."
June has set up a trust fund for Skylar so that
a trip to the Texas cancer institute might be
possible and is helping the family find a home
in the Monticello area to come back to when they
leave the hospital.
Although Connie herself is not in perfect
health, she said she'll spend whatever energy
she has helping Skylar fight her sickness.
"I don't have time to get sick because
she's dying and fighting. I'll fight for her as
long as it takes and if she gets too tired, I'll
do it for her. You just don't give up. You don't
give up." www.thehj.com
"Hope for a miracle" reporter Abby
Leitz
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