BENEFITING: BRAIN TUMOR FOUNDATION
ORGANIZER: BRAIN TUMOR FOUNDATION
My Dad was the first in our family...
I never thought about brain tumors before 2003, it was a month before my 30th birthday and I was sitting in the emergency room listening to a PA tell my dad that he has a massive brain tumor and it needed to be dealt with asap!
A rush of fear flashed through our heads and we all looked blankly back at the doctor. My dad was diagnosed with a Subependymoma, this was suppose to be a good thing, the surgeon said that it was removable and within a few weeks he would go back to life as usual. I wish this is how it had happened, but it didn't. My dad went on to live for only 8 more years, complete with multiple complications, hospital stays, strokes, seizures, and more.
My dad was my hero, he was my rock, this brain tumor stopped him from seeing his kids get married, his grandkids birth and robbed us of having him here today. He died on September 16, 2010 one month before my sister's wedding. RIP Big Guy.
6 years later My story continues,...
After seeing my Dad go through his battles, one of my biggest fears in this world, was one day having a brain tumor. In 2010, I gave up drinking, caffeine, diet sodas, lost 50 pounds. In 2012, I became a marathon runner, a husband and a father. I made a pledge to myself that I would be strongest best me that I could.
In March of 2016 I had just finished my 11th Marathon and my fastest to date, 3:24, I was 42! I had been accepted into the 2016 Chicago and NYC Marathons and this fall was going to be my best race season ever. Then I woke up with the worst headache of my life. I couldn't keep my eyes open and my wife jumped into motion. A call to our doctor prompted a drive to the ER and here I was sitting in the same ER Bay where my Dad got the news 13 years earlier. After some great headache drugs & a minor panic attack, they rolled me back for a cat-scan. The PA returned to me to suggest I schedule a follow up MRI to investigate the Calcium Deposits in my brain. Needless to say this wasn't what I wanted to hear.
I met with my doctor the next day and she tired to tell me that calcium shows up all the time but let's do the MRI to be safe. In a week I was in my first MRI.
The next day I got the call from my doctor, who apologized for telling me this information over the phone, but I was out of town and it couldn't wait. I sat down and stared blankly into space as she said 'you have a brain tumor'.
Having an 8 year education in brain tumors is a blessing and a curse, I was quick to act (met with my first surgeon the next day) but I was tasked to learn ever option before going under the knife. I met with the best hospitals, Mayo, Hopkins, NIH, MD Anderson, GW, Georgetown, I kept journals, and audio tapes of my conversations, I went back and listened to the advice and digested it bit by bit.
Today and tomorrow,...
Today I am working with the excellent minds at John Hopkins to monitor my tumor. There are limited cases of family history of brain tumors, but I have be diagnosed with a Subependymoma as well, my dads was in his 4th ventricle, mine is at the base of my 4th ventricle. They say you become your parents, right? Well the main difference is the size, my fathers was huge…mine is about the size of the end of my thumb, from the last knuckle to the tip. Currently my tumor is not causing any side effects, and until it grows or starts to present itself in a negative way, the doctors feel that the risk of surgery is greater than the risk of the tumor. I am in a program of MRI reviews every 6 months to monitor it, and so far so good!
In 2012 I started training to run my first marathon, the NYC Marathon. That year I raised 4k to support another great cause, my birth defect Epidermolysis Bullosa. The support I received from my friends, families, colleagues, was over whelming.
In 2017 I will be back in NYC and this time I am fundraising for the Brain Tumor Society, other than EB, I can’t think of another issue which has impacted my life as greatly. They are currently doing a campaign to promote early prevention, this is great! Get to them before they are to big and they get to you! In 2012, I flew on your wings as you pushed me to my first marathon and greatness, please help get me there again.
How’s your head?…
My favorite question, usually whispered from a friend that I have told. If you are reading this for the first time and we haven’t talked about it please don’t be mad, this information has been a process for me to work through. This race and this fundraising is my Brain Tumor ‘outing’ party.
Here are some facts about My tumor that will help you understand: It is not fast growing, it is not cancer, it doesn’t affect me day by day, I can’t make it mad by running or over doing it, it has probably been there for years(if not decades), and I do make jokes about it(come on you have to). Oh and best of all, it’s all going to be fine!
How you can help:
The 2017 NYC Marathon will be my 14th Marathon since 2012, this will be my only marathon this year.
Any donation is amazing but I am going to have a shirt made to wear for the event(and any training races up to the event), so yes I am selling sponsorships. I will have a custom race shirt printed to be worn for the NYC race and any warm up races I plan, usually about 3-5 over the summer.
Here are the details:
Sponsorship Amount: Individuals/Familes
$150 - We are with you! - Your Family Name on the front of my shirt
$250 - We got your back! - Your Family Name on the back of my shirt
$1500 - Front of shirt Logo - One available
$2500 - Back of shirt Logo - One available
All of these sponsorships are for my personal shirt, not the teams, I just want to be clear. As many of you know there will be a ton of pictures of the event on social media and you will not only be support me but a great cause!
BRAIN TUMOR FOUNDATION Info -
The Brain Tumor Foundation (BTF) supports the whole patient by addressing their social, financial and emotional needs. In addition, the Foundation promotes the importance of early detection of brain tumors through the education of medical professionals and the public.
The Road to Early Detection, an unprecedented initiative of BTF, offers free MRI brain scans to the public. With nationwide participation and support, BTF’s Road to Early Detection campaign is now an official research study. Although MRI scans to screen for brain tumors are not considered part of standard preventive care, we hope that our research examining the brain scans of thousands of individuals will shed new light on early detection and prevention of this dreaded disease and make treatment more effective when caught early.
* Brain tumors can be extremely aggressive. They are rarely detected at a size and stage when surgical removal results in a treatment that is successful and sustained.
* Close to 1,000,000 people are living with brain tumors that have yet to be detected.
* Brain tumors do not discriminate.