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)

Nicholas 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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Nicholas Story
 (as portrayed by Anthony)

Nicholas was born in September of 1998 and was diagnosed in late November of 1998 with Langerhans Cell 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 something. 

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 6-Mercaptopurine (6MP).  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

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). 

He plays 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.