Welcome to our son's Web Page. It has been provided to keep people updated about our son Nicolas who was diagnosed with Neuroblastoma Cancer at the age of 10 1/2 months. He was a baby then who had to endure operations, numerous tests which I have lost count of and many hospital stays. The cancer was diagnosed as a Stage I cancer with no n-myc amplication. He has beaten the cancer so far, but continues to battle a condition caused by his cancer known as Obsoclonus Myoclonus. This condition continues to limit his abilities to function as other children do. OMS is a condition that causes ataxia of his muscles, it is caused by the immune system constantely attacking his brain. What happened is his body recognized their was a tumor made up of nerve tissue and so it attack it, but it attacks the brain also because it is made up of the same tissue. Although the tumor is gone, his body continues to attack-just like an autoimmune disease, and this attack causes a constant shaking and several limitations on even how he can eat. We now have him immunosuppressed on steroids to keep him from shaking and his eyes moving. He doesnot go out much for fear of him catching something since he cannot be vaccinated. He is now a 2 year toddler but still can not walk and his speech and motor skills are very delayed. This web page will keep you updated on the different treatments we try and how he continues to fight his battle, against this mixed blessing which saved his life but gives him a different struggle to beat!

Journal

Monday, December 20, 2010 9:31 PM CST

IT'S BEEN SO MANY YEARS SINCE I LAST UPDATED MY SON'S WEBPAGE. NICOLAS IS NOW A HEALTHY 10 YEAR OLD BOY. HE CURRENTLY ATTENDS ELEMENTARY SCHOOL AND IS IN 4TH GRADE IN A SPECIAL EDUCATION CLASSROOM. IRONICALLY I FULFILLED MY GOAL AND FINISHED COLLEGE AND NOW I WORK AS A SPECIAL EDUCATION TEACHER IN MIDDLE SCHOOL. NICOLAS STILL HAS SOME MAJOR SPEECH DELAYS AND AS HE GETS OLDER HE WILL PROBABLY NEVER ACQUIRE NORMAL SPEECH. HE DOES TRY AND SAY COMPLETE SENTENCES AND UNDERSTANDS ALMOST EVERYTHING YOU TELL HIM. HE STILL HAS DIFFICULTY WRITING DUE TO HIS FINE MOTOR SKILL PROBLEMS.
ON THE BRIGHT SIDE HE HAS BEEN OFF OF PREDNISONE FOR YEARS NOW, AND HE HAS LEARNED TO LIVE HIS LIMITATIONS. EVEN NOW-TODAY HE HAS THE FLU AND IS RUNNING A HIGH FEVER-BUT NO RELAPSE. HOPEFULLY WE WILL NEVER HAVE GO BACK TO THOSE AWFUL MEDS AGAIN. HE IS USUALLY A WELL BEHAVED BOY BUT HE HAS HIS MOMENTS JUST LIKE ANY NORMAL CHILD. NICOLAS NOW HAS ANOTHER BROTHER SINCE I LAST WROTE. I GAVE BIRTH TO A BABY BOY IN JULY. NICOLAS ADORES HIM. I WAITED MANY YEARS FOR FEAR OF SOMETHING GOING WRONG AGAIN. BUT SO FAR WE ARE BLESSED WITH THIS BEAUTIFUL BABY. NICOLAS WILL HAVE SOMEONE TO KEEP HIM COMPANY FOR SOME YEARS. HIS OLDEST BROTHER IS ABOUT TO START MIDDLE SCHOOL NEXT YEAR WHERE I WORK. SO HE DOES NOT PLAY WITH NICOLAS AS MUCH NOR DOES HIS YOUNGER BROTHER. I WILL TRY AND UPDATE MORE OFTEN.

JEANNIE

Links:

E-mail Author: jadbemi@hotmail.com

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