Happy Father's Day to all the fathers out there. I hope you were able to spend some time with your loved ones like I was lucky enough to do. Becoming a father was the reason that I started 366 Random Acts and State of Kind, so today is a reminder that I needed to get to work on my acts of kindness.
A quick update on Cohen: he has been home from the hospital for the longest stretch of his young life, and we intend to keep it that way. He is still on oxygen and a feeding tube, but is quickly chunking up, so hopefully soon those things will go by the way side. For everything that this little boy has been through, it is amazing to me that he is probably the happiest human being that I've ever seen in my life. If you make eye contact with him, it takes less than 3 seconds for him to glow with the widest smile ever. These wide smiles are seen mostly when his big sister, Isla, dances and sings for him.
As I mentioned earlier, the reason for starting all of these random acts was the birth of my daughter. I always had the idea and intention to continue them coast to coast, but I was rejuvenated after welcoming Cohen into the world. After learning of his genetic disorder I wanted to do anything and everything in my power to make as many people learn about 22Q Deletion Syndrome as possible. I wanted to come up with creative, abnormal, and crazy ways to get the word out there to try to reach people. I intend to come up with a ton of new ways to get 22Q in the minds (and web browsers) of as many people as possible, so if anyone has any ideas, feel free to send them to 366RandomActs@gmail.com.
A few months back, I was having a brainstorming session for State of Kind trying to come up with what I was going to do for certain states while enjoying a beer from a local brewery here in Chicago called Pipeworks. Pipeworks is well known for making incredibly delicious small batch beers, and one thing all of their beers have in common besides outstanding taste, is a little blurb on the side of them that tells a story. I thought to myself "Self, wouldn't it be awesome to have a fundraiser beer with a picture of Cohen on the bottle and a little blurb to raise awareness for 22Q?," so I sprung into action to see what I could figure out. A couple of friends of ours knew one of the owners from Pipeworks, so I reached out to her to see if the brewery might be down for something. She said they are definitely the types of people who would be willing to help out with the cause, and so she introduced me to Beejay Olson. I told him my family's story and what I was trying to do, and I heard back quickly from them that they were more than excited to help out. I went to meet Beejay and his co-worker, Mike, at Pipeworks one day, and I could tell that the excitement was legitimate. They've made it one of the goals of their business to give back to the community around them, so we are kindred spirits in that regard. We came up with the idea to do a fundraising brew called Cohen's State of Kind, a Belgian style Witbier flavored with blueberry, hibiscus, and chamomile (due to the fact that, understandably, it isn't kosher to use the image of a baby to sling beer, we went with the awesome logo below). Some of the proceeds from the sales of the beer would be donated to The Dempster Family Foundation (the 22Q foundation I have partnered with for SoK), and they were also donating a keg of Cohen's State of Kind to a fundraiser we will be putting on with DFF on July 12th. Everyone was even cool enough to allow me to come in on Memorial Day to help with the actual brewing of the beer. This past weekend, my wife sent me off to the store and as I was walking by Pipeworks (they are right around the corner from us) I saw pallets of the beer stacked up ready for distribution. The guys were nice enough to send me home with a case, and let me tell you, the beer does not disappoint. It is the perfect summertime brew.
The beer will be available this week for purchase around the Chicagoland area. Here is a partial list of the retailers, but be sure to call ahead because it looks like it is going to sell out fast. The aforementioned fundraiser with Pipeworks and The Dempster Family Foundation will be on July 12th from 3-5 at Howells & Hood here in Chicago. Tickets are available at this link. You will have the chance to try Cohen's State of Kind as well as hang out with World Series Champion, Ryan Dempster and 2011 Chicago Sport and Social Club Kickball Champion, Ryan Garcia (me). Also, you would be helping to raise funds and awareness for 22Q which is close to my heart. So as the blurb on the bottle tells you come "sit back, relax and enter a new State of Kind!"
Wednesday, June 11, 2014
Next week, Pipeworks Brewing Co. will be releasing Cohen's State of Kind to the general public. This beer is going to help raise awareness and funding for 22Q Deletion Syndrome. I've been asked by many people where they will be able to buy it, and I have a partial list of the locations around the Chicagoland area (in addition to those listed, all Binny's locations will carry it). Be sure to call ahead to make sure they got their order. Also, don't forget to buy your tickets for the fundraiser/release party on July 12th!
|Lifes a Cabernet||Chicage|
|Plum Market Old Town||Chicago|
|Prestige Wine and Spirits||Des Plaines|
|Foremost Liquor||Oak Forest|
|Binnys Beverage Depot||Evergreen Park|
|Sal's Beverage World||Elmhurst|
|Malloy's Finest Wine & Spirits||Lisle|
|Binny's South Loop||Chicago|
|Gennaro Liquors||Oak Lawn|
|Binnys beverage depot||Orland park|
|Andersonville Wine & Spirits||Chicago|
|Grand & Western||Chicago|
|Tribes Alehouse||Tinley Park|
|binny's ah||Arlington Heights|
|Binny's Grand ave||Chicago|
|Printers Row Wine Shop||Chicago|
|Lush West Town||Chicago|
|E&B Liquors||Tinley Park|
|Lush Roscoe Village||Chicago|
|green eye lounge||chicago|
|Vas Foremost Liquors||Chicago|
|Torrence Liquors||Calumet City|
|The Grape n Grain Co||Homewood|
|S&A Liquors||Crest Hill|
|Bottles and Cans||Chicago|
|Binnys Downers Grove||Downers Grove|
|Cardinal Liquor Depot||Joliet|
|Foremost Liquors||Arlington Heights|
|The Beer Cellar||Glen Ellyn|
|Evolution Wines & Spirits||Chicago|
|Gene's Sausage Shop||Chicago|
|Binnys Beverage Depot||Naperville|
|cardinal wines||crystal lake|
|D&D Finer Foods||Evanston|
|Roots Handmade Pizza||Chicago|
|Gentile's Wine Shop||Chicago|
|The Art of Beer||Highwood|
Monday, May 5, 2014
My treatment team immediately put together an aggressive treatment plan. I was to have spinal cord surgery as soon as possible to remove the tumor, followed by radiation therapy to the surgery site. In addition, I was to start an immunotherapy drug that builds up your own immune system to attack the cancer. On top of all this, we learned that Melanoma is one of only two cancers that can spread to the baby while pregnant via the placenta. Although it is extremely rare, we decided to have Max scanned regularly to be extra safe. His pediatric oncologist recommended getting him scanned via CT every 3 months until he is one year old. I ended my regular treatment at the end of January and my most recent scans have shown significant improvement and that the cancer appears to be stable, at the very worst. We are so thankful and happy that the cancer is responding to the treatment! I have started rounds of maintenance treatment, where I received one more round of radiation and will receive the immunotherapy drug once every three months to keep my immune system beefed up to demolish the cancer. We have also decided to get Max [their son] checked for Melanoma, even though it is extremely rare. We wanted to be extra safe and are happy to report that so far, he is healthy as can be and growing like a weed! We are so happy that the treatment seems to be working and are so thankful for our amazing friends and family who have bonded together to help us out in this horrible time of need. We truly believe that our wonderful support network helped make this nightmare a little easier for us. They have come together to help out with things such as babysitting during my marathon of doctors appointments and treatment, provided dinner and entertainment when we were down, raised money for medical bills, and even helped me spread awareness about Melanoma, which is very important to me! Lastly, please, please, PRETTY PLEASE go get checked out by your dermatologist! It is so important to catch this deadly, aggressive cancer as early as possible. So many people are under the impression that Melanoma is "just skin cancer" and no big deal, but that couldn't be further from the truth. Please go get checked by your dermatologist, wear sunscreen, and stay out of tanning beds! It could save your life!"