Our battle with cancer.

Beating cancer, one smile at a time. Sara was born on January 28, 2008 at Heywood Hospital in Gardner, MA. On April 16, 2008, a large lump was discovered in her right bicep. Twelve days later, after two ultra-sounds and several perplexed doctors, it was removed at UMass Medical Center in Worcester, MA. Pathologists in Worcester and Boston examined the tumor over 2 weeks, finally to come to a diagnosis of Melanocytic Neuroectodermal Tumor of Infancy, an extremely rare form of cancer. There have only been approximately 120 confirmed cases of this cancer since 1918, with approximately 6 of those, Sara's included, being malignant. The pathologists then pointed out that the margins of the tumor were not clear, which meant that some of the abnormal cells were still in her body. A second surgery was needed. On June 2, 2008, at just over 5 months old, Sara underwent a second surgery to remove this disease from her body. The second surgery was deemed a success and after many follow up ultrasounds, the doctors are confident that they removed all of the cancerous cells from her body. The good side of this tumor is that it normally does not spread to other parts of the body, nor the blood. It does, however, quickly and aggressively grow, which we saw before the second surgery.

Unfortunately, as family, friends and supporters of Sara, there was very little that we could do. That is where events like the Relay for Life come in. While any money that we raise for this event may not specifically go into curing Sara or researching Melanocytic Neuroectodermal Tumor of Infancy, there are hundreds of thousands of children with cancer, many of these cases are worse than Sara's, requiring long hospital stays, radiation therapy, etc. Our efforts and your donations would make a difference in the lives of these children as well as adults who battle this disease on a daily basis.

I know how tight these times can be for everyone and I don't ask anyone to take food from their, or their family's mouths. I simply ask that you do what you can. We are hoping to run several fund raising events throughout this year and into the future. Along with monetary donations for the Relay, we will need volunteer time, goods and support from all of you. Join our Relay team. If you can't walk, or even if you live across the country, your energy will go a long way.

Please note that Sara's Smiles is no longer raising money for the American Cancer Society through the Relay for Life. Instead, any fundraising done will be done to raise money for the UMass Worcester Pediatric floor. Here is a list of items that they need/want for their pediatric patients.


Melanocytic Neuroectodermal Tumor of Infancy

This page is meant for people looking for information about Melanocytic Neuroectodermal Tumor of Infancy (or MNETI), a rare, typically benign, tumor found in infants. When Sara was diagnosed with it, I searched the internet for days in an effort to find something about it. I really didn't find much - especially for cases that present outside of the head and mouth since over 90% of cases do present inside the head or mouth. Then, finding other cases that were malignant was next to impossible.

As far as I 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 I was told - I can't guarantee the accuracy.) This tumor is very rare and even more rare to be cancerous.

The good thing about this type of tumor, malignant or benign, is that it is not very likely to spread throughout the body. The concern is that it is known to aggressively grow. We saw the tumor double in size in about a week. During this time, the tumor also worked it's way into Sara's bicep muscle, requiring the doctors to remove part of it. Once the tumor is found, surgery is an appropriate treatment. Even if the tumor is malignant, no chemo-therapy or radiation-therapy 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 recommend to anyone and everyone - he was absolutely amazing). I 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. The team in Worcester, MA was backed up by doctors at Dana Farber, Boston Childrens Hospital and other Boston based hospitals.

Please feel free to contact me if you have any questions or if I can help in any way, even just to talk or listen. I know how it feels to find out that my 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 I'm making myself available. And remember, this can be beat. One smile at a time.