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Website Updates: (updated 6/12/2014) ** Updated Home Page
** Fight Hard Smile Big page created.
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am sorry to inform you, but the CT scan has detected a very large mass
on Nicholas right adrenal gland and we suspect is to be Neuroblastoma.
“Neuroblastoma?” we say. “Yes, it is a rare malignant childhood
cancer”, they say. Our lives just flashed in front of our eyes, knees
weak and numb…The start of living our worst nightmare had just begun…as
our one and only child, our warrior, Nicholas… starts his fight against
To know Nicholas, is to love Nicholas! He is the most sweet, kind and
caring little boy and from the minute he was born, we always knew he was
special. His loveable smile so magnetic and contagious for sure. He
has a heart of gold, is easy going, simple and easy to please. We
sometimes question his ways as being “an old soul”.
He has 2 passions in life…his love for his family and friends and love
and passion for sports ever since he was 3years old. At the age of 3,
Nicholas would read the sports section of the newspaper for the
scoreboards. Incredibly, he developed this interest in sports where he
memorizes every player on every team in every state! This of course
was the forerunner to Nicholas’ active participation in sports. His
favorite to play is baseball and soccer…his favorite all together is
Football and Baseball! Nicholas played since the age of 4. He played
on 2 baseball teams and 2 soccer teams…a very active little boy. If he
wasn’t playing a game, he was at practice. That’s where you would find
him…or in front of the TV playing Xbox.
All of our lives changed on October 23rd, 2012. Nicholas was always
very healthy with no health issues, except for your minor colds here and
there. On Thursday, Oct 18th, Nicholas came off the school bus
complaining about “side” or “hip” pain, his first complaint of any kind
of pain. The next day Nicholas woke up with the same lower right side
quadrant. That evening, Nicholas had a vomiting episode, followed by a
high fever and diarrhea. After 2 more days, his diarrhea and fever
would still persist. On Sunday, Oct 21st, an ER visit to eliminate
possible appendicitis. A sonogram was performed and focused solely on
the appendix and was negative and we went home. On Tuesday, Oct
23rd, we contacted our DR once again advising him that he still has a
fever associated with diarrhea. Another DR visit with an evaluation and
felt around the abdomen with no signs of any warnings. The 2nd ER
visit in 3days, this time at Winthrop University Hospital to conduct
some tests on liver counts and a full blood work up.
After several blood tests and a CT scan of the abdomen, we were given
the worst news of our lives. Nicholas was admitted that evening and
underwent surgery on Thursday, October 25th to try and remove the mass.
The partial mass was removed as well as the right adrenal gland. He was
in the hospital for 8days. On Nov 2nd, we were given the final opinion
and diagnosis. It was confirmed that Nicholas will be fighting this
ugly and monstrous disease – Stage 3 Neuroblastoma.
Nicholas’ treatment plan is aggressive with planned 6 rounds of chemo,
possible 2nd surgery, stem cell transplant, radiation and
immunotherapy…approximately 1 ½ years of treatment. A scary and
uncertain journey we are forced to follow.
This site is intended to raise
awareness about Neuroblastoma by sharing Nicholas story and journey with
people around the world. We hope to help other families around the
globe that are faced with the fight against this disease and to help
find a cure to this very aggressive and horrible illness.
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