In this site you will find information on Nicholas health history and his progress to date. 
Nicholas has Langerhans Cell Histiocytosis and we have some helpful research and other links on this topic. 
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Check out our links page for links to LCH fundraisers,
Children's Hospital of WI, Next Steps Survivor Clinic
 and much, much more.

Nicholas Story

My name is Anthony and I am 12 years old, I have a brother named Nicholas and he is 9 years old.  Nicholas and I live with our Mom and Dad, our dogs, Cotton and Mazie and three turtles.

Nicholas was 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 103 to 105 degrees, lethargic, swollen lymph nods, extreme crying and his failure to thrive.  At the time of this exam she discovered his liver to be enlarged.  He was then admitted to Children’s Hospital Of Wisconsin again and had many 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 has seen this disease.  Nicholas prognoses were not a good one.  The doctors feared that he would not survive to see his first Christmas.

He is my miracle brother.  After he 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, CVC—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.  His CVL was removed on September 27, 1999 after more than 10 months, because of an infection.  He has nothing in place at this time.

Our Family and Friends

My Grandma's and Grandpa's live close to us. Along with some very cute Aunts and Uncles. When Nicholas would have to stay in the hospital 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 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 trailer with them. We have a big sandbox, treehouse and next door they have bears. 

Over all Nicholas is a very happy little boy.  He has temperature instability and some bladder problems that my parents and doctors are working on.  He has a mouth full of teeth and is not afraid to show you them, he also has a good right hook, I have burses to prove it. We use to share a big bedroom that had all of our toys in it.  Now since we moved we each have our own rooms.  He likes to come in my room and tell me he misses me just so he can play with drum set.  He does better at putting things away then I do.  Nicholas is going into fourth grade now and can't wait.

Nicholas has had a hard start in life, but we pray every day that things will get better.  My parents love the days when my brother and me are both running around and being silly together.