Beth
Elliott was all smiles as she took a break from being prodded and probed at St.
Jude Children's Research Hospital in Memphis, Tenn.
After
years of wondering and after weeks of undergoing painful medical procedures,
the 19-year-old Bakersfield College student finally received good news: The
size of the tumor in her brain had shrunk. The tumor is not gone. It probably
never will be. But it's smaller and less likely to press into vital areas of
her brain that are required for life itself. The fact that Beth's tumor is
smaller -- even so slightly -- is not good news. It's great news.
"And
I feel better today than I have felt in five years," said Beth.
It's
a testament to her stubborn determination to make medical sense out of symptoms
she had been experiencing since she was a freshman at Bakersfield High School.
It's a testament to the dedication of medical researchers to find cures for
incurable diseases.
Long
journey
Beth's
medical odyssey began when she was a young girl heading into puberty and with
all the excitement of high school looming ahead.
"I
was always tired and had headaches," Beth recalled during a recent
interview at the Memphis hospital.
Her
mother, Leah, and father, Richard, took Beth to the family's Bakersfield
doctor. After a series of tests, Beth's symptoms were dismissed. But she
clearly had less energy than her peers and siblings; her headaches continued;
and she had chest pains.
Unable
to find a cause, her family doctor referred her to a series of specialists -- a
gynecologist, neurologist, endocrinologist and cardiologist. Tests came back
with readings in the normal ranges. A local radiologist reported finding
nothing abnormal in a CT scan taken of Beth's head.
But
Beth, whose lifelong ambition has been to become a pediatric oncology nurse,
and her mother, a registered nurse, were not satisfied with the answers they
were receiving. They knew something was very wrong.
The
mother and daughter launched their own research -- using reference materials
available on the Internet, at Bakersfield College and at local hospitals.
From
what she had read, Beth concluded she had Cushing's disease, or a tumor on her
pituitary gland. Beth and her family asked to be referred to a specialist at
the University of Southern California.
The
USC doctor was skeptical over Beth's diagnosis and resisted having an MRI
performed to rule out a brain tumor. But the young woman insisted, prompting
the doctor to accuse Beth of "wanting" to have a brain tumor. After a
heated exchange, the doctor ordered the MRI.
The
MRI was performed in Bakersfield on the eve of the long Labor Day weekend last
September. Unwilling to wait for her doctor's office to reopen after the
holiday, Beth retrieved her own test results from the radiology office.
She
cried when she read the report. She did, in fact, have a tumor growing in her
brain. It was not on her pituitary gland. Rather it was a craniopharyngioma --
a noncancerous rare growth of cells that generally occurs just above the
pituitary gland. The tumors may interfere with important surrounding
structures, causing serious health problems, such as obesity, delayed development,
impaired vision and swollen optic nerve.
Dr.
Thomas E. Merchant, chief of St. Jude Hospital's Radiation Oncology Department,
said only about 100 cases are reported in the United States each year, so
hospitals have limited experience treating the tumor.
Initially
Beth returned to USC to consider her treatment options -- remove the tumor
surgically; remove it with radiation treatments; or use a combination of
surgery and radiation.
But
doctors acknowledged that permanent removal of the entire tumor was unlikely,
and both radiation and surgery posed risks. Surrounding areas of the brain
could be damaged, worsening Beth's condition.
An
alternative strategy
Disheartened,
Beth and her mother turned to the Internet to search for an alternative
strategy. They discovered St. Jude Hospital had just started a clinical trial
involving an alternative strategy: treating the tumor with a proton beam
radiation protocol, with the goal being to maintain the quality, not just the
length of a patient's life.
Leah
Elliott contacted Dr. Merchant to discuss her daughter's inclusion in the
clinical trial. She sent Beth's medical records to St. Jude Hospital. The
records included the earlier CT and MRI scans. Merchant said both clearly
showed the presence of the tumor.
Beth
was accepted into the clinical trial and by Sept. 27 -- just three weeks after
her condition was correctly diagnosed -- she was being tested and treated at the
Memphis hospital.
"It
was the first time I had a doctor who sat down and listened to me," said
Beth, recalling her first meeting with Merchant. "It was the first time
that a doctor seemed to know more about my condition than I did."
Merchant
reviewed the treatment options, including surgery. But he encouraged her to
enter the clinical trial because it promised to give her the best quality of
life.
For
that reason, "I made the decision on the spot," she said.
That
meant Beth and her mother would not return to their Bakersfield home for more
than three months. The initial testing at St. Jude Hospital was followed by six
weeks of daily treatments at the University of Florida's Proton Therapy
Institute. The university is helping facilitate St. Jude Hospital's clinical
trial.
"You
go into a room, put on a gown and have a mask that goes on to your head,"
Beth recalled, explaining that the mask is engineered to precisely guide
radiation beams to strike the tumor and spare surrounding tissue. "They
snap you to a table and you go into this huge machine."
The
one- and two-hour sessions were conducted five days a week for six weeks. Even
when Beth was briefly hospitalized to treat excruciating headaches that
resulted, she was taken out of the hospital each day to continue her
treatments.
By
January, Beth had returned to Bakersfield College, where she is completing
prerequisite science courses in hopes of eventually entering the nursing
program at Cal State Bakersfield.
During
the first year following completion of radiation therapy, Beth will return to
St. Jude Hospital for testing and evaluation every three months. After that,
the frequency of her trips will drop to twice a year, or every six months, and
then to annual checkups.
It
was during the follow-up visit in August that Beth -- at long last -- received
the good news: Her tumor was smaller.
"If
the tumor doesn't grow, we call it a success. If it gets smaller, we are
exceedingly happy," said Merchant, who explained that most of Beth's tumor
is "calcified" and not expected to disappear. The portion that
shrank, relieving the pressuring on surrounding areas of the brain, is a
cyst-like mass.
"Beth's
tumor is quite small. It is certainly not the smallest [he has seen] but it is
far from being the largest. It is an intermediate size that made it a perfect
target for radiation," Merchant said after he gave Beth the good news.
Merchant
expects to include about 125 patients, or about 20 per year, in his clinical
study, which could extend over a period of five to six years. The results of
testing and treatment will be documented, with the goal of developing a
treatment protocol that can be used by health care providers throughout the
world.
"We
are always searching for answers," said Merchant, praising patients, such
as Beth, for their willingness to help find new cures.
Beth
will be a St. Jude patient throughout her life as she returns to the hospital
for follow-up monitoring and care. The lessons learned from Beth's case, as
well as those of other patients in the clinical trial, will help generations of
children who develop this rare brain tumor.
Beads and blankets help them thrive
Like most patients at St. Jude Children's Research Hospital in Memphis, Beth Elliott has documented her medical journey on a string of beads.
There are the beads for the good days and the bad days, the ambulance rides and the needle pricks. Each procedure -- and for a really sick kid, there are many procedures -- has its own special-colored bead.
But as a participant in a clinical trial at St. Jude Hospital, the Bakersfield College student discovered that there was no bead to represent the cutting-edge proton radiation therapy being used to shrink the tumor in her brain.
Beth spent six weeks last fall at the University of Florida's Proton Therapy Institute, which is assisting St. Jude Hospital in developing a treatment protocol for her rare condition that involves a noncancerous growth of cells, generally occurring around the pituitary gland.
During Beth's stay in Florida, she took a class in bead-making and created a glow-in-the-dark bead that represents proton radiation therapy. In addition to adding the bead to her own string, she plans to make enough to supply them to other young patients at St. Jude Hospital, who are being treated with proton radiation therapy.
Donated beads and blankets are among the many items that give comfort to the children who each year undergo experimental treatments in St. Jude Hospital's decades-long search for ways to cure rare or "incurable" medical conditions.
While accompanying her daughter during her treatment in Florida, Leah Elliott organized the mothers of other St. Jude Hospital children to make cozy blankets to warm and comfort patients.
"It gets pretty cold in there," said Beth, describing the hour or two each day that she was strapped to a table and placed in a huge machine, where she was bombarded by proton radiation.
"My blanket was so important to me. It was the only thing that stayed constant in radiation."
After returning to Bakersfield, Beth and Leah have encouraged family and friends to help make blankets for St. Jude Hospital patients.
To learn more about Beth Elliott's medical journey and how to help children being treated at St. Jude Hospital, click on to her blog at www.bethfightsback.com.
-- Dianne Hardisty
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