Vincent, 11

January 14, 2014 is a date that we will forever remember…..The diagnosis of a brain tumor for our seven year old Vincent. Wait…. What??? How could this be? How did we not know? Questions we still ask today. This young man has endured more than most adults we know and is our SUPERHERO!

March 21, 2014 we watched as they wheeled our son to brain surgery, quite possibly the hardest thing we’ve ever had to do. Ten and a half hours in surgery and another two hours in recovery before we could see our Vincent. He was swollen, red and didn’t say a word, just cried.But the tumor was removed successfully and all he had to do was heal. We waited for lab results to come back, and it was a Atypical Meningioma Grade 2. Rare in children and with only 2-3% of people diagnosed as Atypical. Vincent was on the road to recovery and we could not thank his neuro team enough (Dr. Maher and the staff of Motts Children’s Hospital, Ann Arbor Michigan).

September 2015, Vincent complained of a headache and did not seem like himself, off to Michigan we go. HYDROCEPHALUS???, what is that? ANOTHER brain surgery? The neuro team hoped to drain the fluid and not place a shunt. SUCCESS! As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition. Over one million people are affected by Hydrocephalus and we need a cure!

September 2016, again Vincent started having headaches, but this time he was vomiting. A call to the neuro team and we are on our way to Michigan again. His Dr. explained that they thought a shunt system would help Vincent, but this would require another brain surgery. Seriously, what could we do? After the shunt was placed, Vincent would have two, yes two, more brain surgeries, because his shunt would not cooperate. Finally on November 15, 2016 his answer came in the form of collagen being placed around the shunt tube in the ventricle.Vincent has been surgery free for eight months now! He continues to have headaches off and on, but those quickly pass with some Tylenol.

We know that Hydrocephalus is something Vincent will live with for the rest of his life, but that’s not slowing this kid down. Even with three brain surgeries in the Fall of 2016, he maintained his GPA and finished his 5th grade year as an honor student. Vincent is active in the Boy Scouts and hopes to receive his Eagle Scout someday. Vincent is our SUPERHERO!

 

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

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