Noah's Battle

My name is Amy Nicolosi my grandson Noah Nicolosi is 18 months old. In May of 2017 he was diagnosed with a rare brain tumor. Coronoid Plexus Carcinoma. This tumor on a scale 4 being the highest it's a 3. It is found in children 4 and under. He fell and was taken to the hospital for a CT scan in which they found a tumor a little bit bigger then a golf ball. He was then transferred to Dallas Texas Children's. He then had two more MRI'S. The neurosurgeon told us that he would have to have surgery right away due to the fluid build up in his brain. Our family decided to have him transfer from Dallas to Houston Texas Children's since we resided in Livingston TX and we didn't want different Dr doing the surgery and wanted to ensure if Noah had to endure multiple surgeries it needed to be the same one every time. So they transported him by ambulance to Houston. When we got there we then seen many doctors and he had many test ran to ensure his best outcome. They operated on his brain June 5, 2017. The surgery lasted about 5 hr's. After the surgery he had a drain in his brain so that the fluid could drained. This was very difficult to think of cause we are dealing with a baby. The bottom of his ear had to stay level with this lazer that was on a pole. This was to ensure that not too much fluid would come out. Noah then received a MRI to check and see if his surgeon was able to get it all. The MRI showed that they were successful in getting it all. So after consulting with the oncologist. They left us with a hard decision to make. We can start chemo with no option of radiation because of fact that we're dealing with a baby. Or we can wait and do MRI every 3 months. So we battled with this decision and really felt helpless and heartbroken. Cause really how do you make that call. Do you do the chemo and watch your loved one get so sick and fragile and it might not come back. Or do you not do the Chemo and it comes back then he has to endure another brain surgery. So after a devasted situation we decided to do the MRI'S. So on August 23, 2017 Noah's first MRI was scheduled. From the results of that MRI we got somemore devastating news. The oncologist informed us that Noah's tumor had came back. This was the worst thing that we could ever imagine. With having to watch our baby go through a surgery in his brain at such a young age and not have any reasons or answers as to why and how it happened. With little to just a couple options. With now the feeling of guilt and shame and feelings of nothing ever felt before. So now he will have to endure another surgery that is of such high risk. Then now has to has to have another procedure done with the removal of this tumor. They want to place a port in his chest for his 6 months of Chemotherapy treatments. How can a baby his age and size go through something like this. Baby Noah's battle has began again. He had his second brain surgery on September 11th, 2017 and it lasted 8 he's. He was scheduled a week prior but due to Harvey's Devastating outcome the surgery was postponed. Then with the worry of this tumor growing and once again putting fluid on his brain we had a storm that wasn't showing any mercy much like Noah's Tumor. He is now done with the second surgery and is in ICU. The family is already out of resources and is at poverty level. With a worry of financial crisis in the middle of crisis of a life threatening illness. We ask for prayers and any support with great appreciation. With this long battle for baby Noah's fight for life and this family's battle to have the best outcome.

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Organizer

Amy Nicolosi 
Organizer
Livingston, TX
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