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What cancer cannot do.

It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot supress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquor the spirit.
-Source Unknown

About MNETI

Melanocytic Neuroectodermal Tumor of Infancy

This page is meant for people looking for information about Melanocytic Neuroectodermal Tumor of Infancy (or MNETI). When Sara was diagnosed with it, we searched the internet for days in an effort to find something about it. We really didn't find much - especially for cases that present outside of the head and mouth. Then, searching for cases that were malignant were next to impossible.

As far as we can tell, Sara is the 120th (ish) clinical case of the tumor and only the 6th case that is malignant. (Note: These numbers are just what we were told - I can't guarantee the accuracy.)

The good thing about this type of cancer is that it is not very likely to spread throughout the body. The only real bad point is that it is known to aggressively grow. We saw the tumor double in size in about a week. Once the tumor is found, surgery is an appropriate treatment. No chemo or radiation is needed, nor will it work.

All of Saras treatment was done at UMass Medical in Worcester, MA by a brilliant team of doctors lead by Dr. Anthony DeRoss (Whom I would refer to anyone and everyone - he was absolutely amazing). We met with Boston Childrens Hospital, Dana Farber and even called St. Judes - all of whom had never dealt with, nor seen MNETI. The oncologist, Dr. Keuker, has dealt with it in the past, as well as the Plastic Surgeon, Dr. Lalikos, who consulted with Dr. DeRoss before Saras second surgery.

Please feel free to contact us if you have any questions or if we can help in any way. We know how it feels to find out that our child has a rare disease and not be able to find much information out there. That's why I built this page, that's why we're making ourselves available.