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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 comfortable.

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 having Cytoxin.

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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