Nicolas Benavides (Our Hero & Angel) Page

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

Friday, April 20, 2007 2:36 PM CDT

It has been almost a year since I last wrote. Nicolas has grown alot since last year. Healthwise he is doing great although we have had to increase the Prednisone dosage to at least once to twice a week. He has come down with several illnesses and was hospitalized for three days in January. He came down with Influenza type B and became quite ill. He has recovered except for some colds.

Speechwise unfortunately the progress continues to be very slow. He still cannot talk fluently. In all other areas he almost like a normal child. He plays just like any other child and he has become quite naughty. He really enjoys bothering his older brother and making him mad. He will be starting first grade this next semester of school. For now I feel he should remain in Special Education and his doctors feel this is the best decision for now. This summer I hope to make some more progress with Nicolas in the speech area.

Jeannie

Hospital Information:

Christus Santa Rosa Hospital

Links:

E-mail Author: jadbemi@hotmail.com

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