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Big Days

10/29/2012

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This day last year, Laura, Zoë, and I were winding down from having an awesome photo shoot. 

Today is my birthday and last year on this day, it snowed.  Laura marveled at Zoë's first snowfall, and I cringed at the thought of shoveling more snow off of our driveway.  I believe the previous year we had in the vicinity of 80 plus inches of snow.  The winter in 2011/2012 was a mild one, at least in the snow category.  If you have been reading my blog, you know how harsh it was for us in another category though. 

One year later, on my birthday, there is a hurricane.  Laura and I used to joke that on all of Zoë's big day's there was a storm of some kind.  Snow.  Rain. Sleet.  Hail. 

I mentioned to Laura that when Zoë grew up, I wanted the two of us to have a special celebration between October 22nd and the 29th.  Some years, it could have meant that we would enjoy the sentiment of sharing birthdays so close to one another and other years, maybe even going to Disney. 

Regardless of what has happened in the last year, October 22nd and the 29th will always be big days for me.  That is why I am not surprised that Hurricane Sandy is knocking at my front door. 


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One year ago now

10/19/2012

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One year ago now, at roughly 4am, I was in the basement collecting somethings we would need at the hospital.  I yelled up the stairs to Laura, "Alright, I'll be ready in a minute."  I texted my boss who never seemed to sleep.  "Laura is in labor.  We are on our way to the hospital."

Why am I not surprised that I woke up today at three am.  Maybe my body remembers those sleep deprieved moments with Laura, timing contractions and waiting with great anticipation and excitement to meet my daughter. 

One year later, feeling ten years have passed, I am remembering Zoë and the prodromal labor that Laura endured.  This day last year marked the first day of a 72 hour labor.  Nothing I have ever seen in a movie made by Hollywood depicted labor how Zoë's birth really happened.  We didn't drive 90 miles an hour nearly causing multiple accidents en route and involving a police chase/escort.  I drove us to Umass Memorial going somewhere in the twenty mile per hour range.  In fact, 395 had construction and was down to one driving lane.  Who knew that there would be so much traffic at 3:30 am, all stuck behind the car with the pregnant lady.  When a line of ten or so cars behind us honked their horns and probably cursed us, Laura asked me to drive even slower because I was already gong too fast...

One year later, three days of labor.  I will remember those moments with my wife that ended with the most terrifying and blessed day of my life. 




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Prayers for Baby Blake 

10/13/2012

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For the last couple of days, I have written some words and deleted them.  I have something I need to say.  But I just don't know how when I cannot think of anything good to say about Rhabdoid Tumors. 

It should be easy then, right?  Because what I want to write about is not the cancer specifically, but a nice family I recently meet through Facebook.  They lost their son to a Rhabdoid Tumor, like Zoë's.  He was born with MRT and for six weeks, he battled for his life.  I cannot fathom what they experienced from the very beginning.  Zoë was born healthy and then two months later one microscopic cell did not replicate correctly and then before long, we were living day to day with the worst news a parent could have delivered. 

Baby Blake was beautiful boy born on August 22nd, 2012 with a Malignant Rhabdoid Tumor.  I learned about his battle and his family's struggles a few days ago.  Once I visited their Facebook page, Blake had already passed on October 5th.  His parents were already making his funeral arrangements.  I felt devastated for their loss, because I know how hard it was for Laura and me to leave Zoë's body behind at the funeral home. 

Baby Blake is no longer in pain, he killed his cancer.  A feat that the most intelligent scientists are still unable to accomplish.  It is terrible that the victory came with such a high price.  But that baby boy is no longer in any pain.  He will be remembered by many people, especially his loving parents. 

My hopes are that the MRT community can come together and battle on for children like Zoë and Blake.  They will be missed, but our challenge to this cancer has been set.  Our journey together against this wicked villain has begun.  We shall Battle On! together!

Please visit the Facebook page made in honor of Baby Blake and his loving parents.  Parents should never have to be expected to do what they are living right now.  Blake's parents are in need of your support and encouragement. 

Rest in Peace, Baby Blake.  Your parents pain is unimaginable right now, but will ease as the days continue.

http://www.facebook.com/prayersforourbabyblake
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The BFG Animated Movie

10/12/2012

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I am experimenting with Weebly to learn how to use the website better.  In the meantime, while I am learning something new, why don't you enjoy this animated film of Roald Dahl's famous book, The BFG...
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One degree of separation from the end of cancer

10/4/2012

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Every now and then I post a picture of myself and Laura holding an object that has been signed by someone famous.  I am not a braggart and a show off.  The reason I post these pictures is that when we were in the hospital with Zoë, we somehow got on the topic of us being one degree of separation from several celebrities.  Our discussions lead us to having memorabilia signed by those people and then host a live and silent auction.  The funds raised would benefit children diagnosed with MRT. 

For months, I thought about this prospect and finally did something completely outside my comfort zone.  I started to email, to tweet, and literally walk up to celebrities to explain my situation and ask if they would make a donation or sign something we already own. 

In a weird way, I thought I could be a contestant on Celebrity Apprentice, scrolling through the contact list in my phone to invite my celebrity friends to the season finale challenge and donate to my cause. 

I have been fairly successful so far, and now I want to call on my friends for help.  Do you know someone of interest?  Are you one degree of separation from someone who has made an impact on society and culture?

The auction is about great minds contributing to society.  They don’t necessarily have to be an author or movie star, but someone who has contributed to their craft or profession.  My friend David suggested talking to judges who might donate a historic document from a famous trial.

 I am trying to be creative.  The auction I see spans across various professions and crafts.  So far we have books signed by authors, an astronaut’s autobiography, items from athletes, a film director, and a Tommy Heinsohn signed basketball.  I seek memorabilia by people who have done great things, broken through barriers, and made this country and this planet a better place for all.

Do you think you can help?  Do you know someone of interest?  Do you have any ideas or suggestions to help us blow up the auction and do massive amounts of good?  Let me know!  I want to hear your suggestions!!

The live and silent auctions will take place sometime during the week of Zoë Festival 2013.

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Congratulations, Mr. Casey Duckett!

10/2/2012

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You can know someone for almost 20 years or you might have just meet that person a couple of days ago.  Both of those possibilities seem true to me, several days after one of my closest friends married his best friend on Saturday. 

I cannot remember exactly when I met Casey, sometime in the early to mid 90's on Thayer Street in Providence, RI.  We have had a lot of fun together over the years, getting ourselves into and out of trouble.  We have also spent a lot of time away from each other, sometimes up to a year or so, and when we reunited after the time and distance, we resumed our wonderful friendship without any interruption.  Casey has a unique sense of humor and I could always count on him to make me laugh at any situation I found myself in, good or bad.  I could always rely on him if I needed a helping hand.  Casey has proved over and over again to be one of my best friends.

An interesting fact between Casey and myself is that we share the same birthday and even the same year.  What a incredible bond.  My friendship always felt like a brotherhood.  I can't read anyone's mind, but for this reason, I always felt like i knew "my twin from another family" better than some people because of that bond, born only hours apart. 

I always thought I knew my dear friend, Casey.  That was until I saw him married to his fiance.  At that moment, when they took their first dance together, I felt like I never really knew the true him.  That is because I never saw him so happy in all that time we built our friendship. I am so happy for you, Casey.  I hope you and your beautiful bride keep dancing and keep the happiness that glows in your hearts and your eyes aligned in perfect harmony!

I am pleased to meet you, Mr. Casey Duckett!


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    Zeppo Young finds joy in the simple things in life, such as digging around in his garden, and fermenting vegetables. 


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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.