Care During Chemotherapy and Beyond
Samantha - Neuroblastoma Survivor
It was around Christmas time, 1995. As the family was preparing for the holidays
we began noticing Samantha becoming a little pale, was becoming very irritable and
she began leaning to one side. A trip was made to the doctor's office but nothing
was found to be wrong. We were told that Samantha is more comfortable on that side
and not to worry about it.
Several weeks later the symptoms began to worsen. During a two-week period, two
trips were made to the Emergency Room. The diagnosis was "backed up stool". We were
instructed to give Samantha laxatives.
On her 1st Birthday we noticed a radical change in her. She was sitting in her high
chair and we had just given her a large piece of her birthday cake. She was crying
and leaning on her right side. We picked her up and held her and she quieted down
and things seem to be a little normal but she would constantly move trying to get
A few days later, while lying on the floor Samantha began to cry. At first we thought
she just wanted to be held but grandma saw something else. Grandma picked Samantha
up and demanded that we contact a different doctor and find out what was happening
because something was wrong. Eleven days prior to this, Samantha had her first year
physical and given a "clean bill of health".
The following morning Samantha was taken to the doctor's office and was seen by
a different pediatrician. Blood tests were taken; the doctor examined Samantha carefully
and found a large tumor located on the lower right quadrant of her stomach. Immediately
we were instructed to take Samantha to radiology where a sonogram was performed
and the tumor isolated. 30 minutes later we were in route to Shands hospital at
the University of Florida.
We were admitted immediately. I can't begin to tell you how efficient things seemed
to be. Samantha's bed was ready; an IV pole was lined up with IV lines dangling
from each hook. Bags, gowns, sheets, everything was in place. Tests were taken almost
as soon as we arrived and the Dx was given. Samantha was in Stage IV, with a Neuroblastoma
Cancer and given a 30% chance of survival.
From that point on, meetings were held, a protocol selected and Samantha underwent
treatment. Samantha's protocol required chemotherapy, radiation treatments and surgery.
The treatments lasted almost a year. The chemotherapy and radiation did their job
and shrunk the tumor so that on July 5th, 1996 (our Independence Day) the tumor
was removed during a 9-hour surgery procedure. On September 11th and 12th, Samantha
received what turned out to be a life saving bone marrow transplant. During the
transplant Samantha almost died on two separate occasions. At one point, she entered
a near "coma" and we felt that she may not recover. But by the grace of God she
did recover and from that point on, her rate of improvement was considered by some
to be "miraculous".
On October 31st of 1996, Samantha was released from the hospital and began monthly
visits to the Cancer clinic for monitoring and urine tests. During these visits
Dr. Magheed kept asking us about her talking. In March of 1997 that we had our first
initial appt for her hearing to be screened. At which time we found out that her
hearing had been severely damaged.
We were told it was the chemo theraphy drug named Cytoxin that caused the damage.
It was the heavy dose in the BMTU that we believe bottomed her hearing out totally
and took any of the remaining hearing that she had before. She was supposed to have
her hearing tested periodically while in the hospital. Unfortunately, she was too
little and too sick too have that done. It was either her hearing, or her if you
really sit down and think about it. She wouldn't of made it thru the Cancer without
They explained that with age her hearing would worsen and in time her hearing would
more than likely decrease. We thought 17/18 years old, not 4 years. Her hearing
continued to worsen where even the hearing aids weren't helping. Finally in September
of 2000 it was decided that she needed the Cochlear Implant.
Samantha had the surgery February 8, 2002 and the cochlear device was hooked up
on March 18, 2002.
Her hearing has improved 1000%. Instead of knocking on a wall or stamping my foot
to get her attention, I simply call her name in a normal voice and she hears me.
She can hear a cats meow and dogs bark. She hears a knock at the door and the sound
of the dryer. For the first time she can hear the "S" in her name. She can hear
music and the sound of a Harley. And she'll tell you that she can hear the angels.
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