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Cancer servivor credits faith for recovery
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Sam Denton certainly has faith—in God, in his parents, in his doctors. And in himself.
Diagnosed at the age of 9 with a brain tumor, he has survived brain surgery and extensive rounds of radiation and chemotherapy.
Now 17 and cancer-free, Sam said he did it by putting his faith in God
and his parents. “You’ve got to trust, you’re not in control—trust was
a really big thing during all this,” he said.
It’s been a long, unclear road. It took four months for Sam to be
properly diagnosed after initial bouts of morning nausea and vomiting.
Because the nausea was sporadic and not accompanied by headaches,
doctors at first attributed it to the boy’s asthma and allergies.
On a long car ride during a family vacation, however, Sam’s mom, Susan,
saw that he was vomiting during an extended period of time, nearly 11
hours.
Once home, Sam saw a gastroenterologist; still, no diagnosis.
Then Sam complained he was having “tunnel vision.” The family
optometrist, Dr. Melvin Watsky, examined Sam and concluded something
was putting pressure on the young boy’s optic nerve.
Within a couple days, Sam was at MUSC, where an MRI showed an
aggressive medulloblastoma, a brain tumor at the rear of his head and
dangerously close to his brain stem. He underwent surgery the next day.
Instead of the short recovery expected, Sam developed several
complications including cerebellar mutism, and was in the hospital
nearly a month. “He could not walk or talk, and had to learn how to do
everything all over again,” explains his mom. The condition, most often
seen after surgery in the posterior fossa region (the brainstem and
cerebellum)—which is what Sam had—temporarily affects speech and motor
skills. “He would just stare at the wall. We wondered, where is our
child?”
Sam endured 31 rounds of radiation with Dr. Joseph Jenrette, traveling to MUSC from Goose Creek every weekday.
Both his head and spine were irradiated, so on top of being weak and
nauseous, it was physically painful for him to eat because his throat
was “burned.” He lost a lot of weight.
Throughout this time, remembers Susan, Jenrette was very patient and
encouraging, “He assured us we’d get to the other side of this.”
Meanwhile, Sam was also undergoing occupational and physical therapy.
“He had to learn how to walk again, because his right side wasn’t
working properly.”
 The Pediatric Neurology group
After four of eight of the recommended rounds of chemotherapy, and with
strong support from the pediatric hematology/oncology team, Susan and
Eric, Sam’s dad, decided their son had had enough. “Sam’s strength has
inspired us,” said Dr. Jackie Kraveka.
“His body was hypersensitive to the medication, and the chances of
survival were the same if we continued or not,” said Susan. “Sam was
losing his hearing and his kidneys were beginning to be damaged.
“That
was the hardest part as parents—making decisions about his treatment.
Sam looked to us to decide for him. He was very trusting, quietly
determined and rarely complained. He just said he didn’t want to have
to go through any of this again,” said Susan.
Sam’s success, said Stephanie Kelleher, nurse coordinator for the MUSC
brain tumor clinic, underscores the importance of the early diagnosis
of brain tumors when they are smaller so they can be more safely
resected by the neurosurgeon.
Kelleher is part of the pediatric neuro-oncology group (PNOG) at MUSC,
a multi-disciplinary team focused on the care of children with tumors
involving the brain and spinal cord.
Brain tumor patients have needs that require input from many caring
health professionals, explains Dr. Bernard Maria, PNOG director. The
PNOG includes neuroradiologists, pediatric neurosurgeons,
neuropathologists, pediatric hematologist-oncologists, radiation
oncologists, and a pediatric neuro-oncologist.
“We
huddle, review the child’s progress and studies to make decisions on
the best course of action as a team,” said Maria, who is the only
pediatric neurologist/neuro-oncologist in the Southeast. The
interaction of the team ensures a balance: to provide treatment that
will give young patients a normal life expectancy, yet not produce too
many side effects.
“The teamwork is here at MUSC, and Sam is a product of that teamwork,” he said.
A slow increase in the number of children with brain tumors in the last
10 years has made it a leading cause of death in children from disease.
There are more than 120 subtypes of brain tumors in children.
“Sixty
percent to 70 percent of kids with a brain tumor live five or more
years after diagnosis, but we want to focus on improving the additional
70 years of life, and help lead lives that are as close to normal as
possible,” said Maria.
Sam and his family are poignant reminders that more work needs to be done.
Now a healthy teenager at Saint John’s Christian Academy in Moncks Corner, Sam had a lot to overcome, said his mom.
Side effects from treatment left him with an information-processing
disorder, so school is not as easy as it used to be. He lost the
peripheral vision in his left eye and also has some hearing loss.
“I
can’t do all the things I used to do, and people get frustrated with my
hearing, so I changed my hobbies to less social stuff like hunting and
woodworking—things that don’t involve communicating.”
In his writing, Sam has also found a way to express himself. In
December he joined Maria and the brain tumor team on a grand rounds
presentation to doctors where he talked about his life, and read the
group a poem he’d written a few years ago, entitled Faith.
“There
wasn’t a dry eye in the room,” recalls Maria. “Sam is an inspiring
example of success, and he is committed with his family to help other
families go through this.”
His diagnosis and treatment has “changed all of our lives forever,”
agrees his mom, who said it took the whole family. “At first I wanted
to do it all myself, to protect him. The doctors told us to keep our
lives as normal as possible, and I couldn’t understand that. But I did
end up understanding it.” Sam’s grandmother moved in with the family
for eight months to help out. “In the middle of it all, we found a way
to keep the rhythm in our lives,” said Susan.
She and Eric were warned that siblings of sick patients often become
the invisible children, so they were careful to include their younger
son, Joe. “It’s a very taxing, emotional time, and challenging because
we love them both, but the sick one is requiring more of our attention.
It’s truly a family affair.”
Getting constantly poked and prodded was hard, recalls Sam. “But it
really helped when the nurses and doctors made jokes or tried to make
me laugh. It made me think about something besides the pain and hurt.”
He’s thankful his parents and family pushed him through it, and that his friends came and helped walk with him.
He has this advice for kids going through a similar experience: “If
you’re going to get through anything, you’ve got to think that you’re
going to do it. Trust in the Lord. Stay positive, keep working and
it’ll eventually come back to you.”
Editor's note: The article was reprinted from Kids Connection, a monthly e-newsletter from MUSC Children's Hospital. Visit http://www.musckids.com/.
Friday, Jan. 30, 2009
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