Nic was diagnosed with
Henoch-Schonlein Purpura for the second time in 1
year. Now he goes to the doctor once a week for blood pressure test
and urinalysis testing. (updated 11/08/10)
was diagnosed with Langerhans Cell Histiocytosis and started chemotherapy
when he was nine weeks old.
In this site you will find
information on Nicholas health history
and his progress to date.
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portrayed by Anthony)
September of 1998 and was diagnosed in late November of 1998 with
Histiocytosis. Our Pediatrician was examining him during his two-month
check up. She had been concerned about our weekly visits to her and to the
children’s hospital emergency room along with a three day stay at the
hospital for fevers of 104 degrees, lethargic, swollen lymph nods,
extreme crying and his failure to thrive. During that first stay at
Children's Hospital of Wisconsin Nicholas had several tests done: CT
scan; CBC and a spinal tap. All coming back negative and they sent us
home with the belief that he had a "virus".
At the time of this two month exam the pediatrician
discovered his liver to be enlarged. He was then admitted to
Children’s Hospital Of Wisconsin, again,
and had many more test performed to determined what was wrong. It took awhile to
determine his diagnosis because only 1 in 200,000 children are affected.
It had been several years since Children’s Hospital had seen this disease.
Nicholas prognoses were not a good one. Nicholas had been to the ER
or the pediatrician office 13 times before he was diagnosed. The doctors
feared that he would not survive to see his first Christmas.
After Nicholas was diagnosed with Langerhans Cell Histiocytosis they
immediately placed a
Central Venous Line (CVL) in his chest on
November 25, 1998. (CVL, or central venous catheter, Type of
intravenous tube that is used to give fluids and medications to infants or
children. The catheter is placed in a major vein of the body during surgery
or by insertion through a vein in the arm, leg or head.) This
enabled the doctor’s take his blood and give him his chemotherapy, blood
products and anything else he needed through his CVL. This worked great
because then they didn’t have to poke him every time they wanted to do
Nicholas had multi symptom LCH.
He had skin, bone marrow, spleen, liver and ear involvement. He
started his chemotherapy regiment on November 26th, 1998. He started
with daily doses of Prednisone, Vinblastine and weekly
For three days each week he would get Bactrim for one year. Then every
three weeks 6MP and Prednisone. This went on for the next 6 months.
One month later we started it all over again.
Our Family and Friends
Our immediate family lives pretty
close to us. When
Nicholas would have to stay in the hospital Anthony I got to do fun things with my
Aunts and Uncles. I got to go to my Aunt Julies work, she was an early
childhood teacher, and I had lots of fun playing with the other kids. I forget she is
even there. Sometimes she would take off work and we would bum around, we
liked to go ice-skating and to the movies. My Uncle Alan always took me to toy
stores or his house to watch cable TV and play Dukes Of Hazzard. I
also got to go up north to our cabin with them. We had a big sandbox, tree house and next door
they have bears.
Winter of 2009
The winter of 2009/10 was a tough one
for Nic. He got swine flu and then strep throat 3 times. In
October he had a bad, painful case of Henoch-Schönlein purpura.
Because of that he had to stop playing on the basketball team and couldn't
start wrestling. It took about 4 months to get back to all
of his normal activates.
Today Nicholas does
have some Central Nerves System (CNS) damage. He has temperature instability,
he can not regulate his body temperature. he has some
bladder problems that we are all helping him deal with also. He has a
high percentage of getting a secondary cancer which would most likely be
Acute Myeloid Leukemia (AML).
electric guitar and the alto saxophone, is on a Little League Baseball team, a wrestling team,
school Cross Country team and school Basketball.
He has lots of friends at school and gets all A's on his report cards.
He wants to be a scientist when he grows up. Mom is not too thrilled
when he does experiments in the kitchen. I guess it is better then the
one he did in the living room last year. DON'T ask she is still mad
about that one!
Nicholas has had a
hard start in life, but we pray every day that things will get better.