Do you remember what you were doing exactly ten years ago, July 2, 2008? I do.
It was 8:00a.m. and I was awake and alert, greeted by the surgical team, nurses, anesthesiologists and clinicians, as well as my family. The day before, I learned that the cause of my double vision was a massive tumor sitting in the ventricles of my brain, complicated by hydrocephalus requiring surgery immediately. As the preparation wrapped up, the clock turned to just about 9:00 and my family and I said our emotional goodbyes as I was rolled into the OR, but I remained confident. When I would wake up, my life would change forever. But how?
Admittedly, I never thought I’d say this, but this has been the best roller coaster ride I’ve ever been on. Reflecting on the past decade, I’ve learned a lot about myself, but also about faith, perseverance and adversity. In the darkest of times, I felt alone, scared and defeated – wondering when my life would take a turn for the better.
Now, exactly ten years later, I am turning to a new chapter in life as I say goodbye to my colleagues at the United Way and embark on the journey at the helm of the CT Brain Tumor Alliance, Inc. as the Executive Director.
More than ever, it is clear that this path happened for a reason and I am so grateful for my newfound appreciation for life and I live every day to the fullest. So, for today, I would like to simply say “thank you” to everyone who has played a part of my life these past ten years.
Mom and Dad; Jackie, Wayne and Stephen; Ashley; my extended family and friends; my partners in this quest to find the cure; my friends and colleagues at the CTBTA; and last but not least, Dr. Piepmeier, my nurses, clinicians and therapists – THANK YOU. Without each of you, I’d be lost at sea.
I am eager and excited to begin this journey to make Connecticut a center of excellence in brain tumor care. I am honored and humbled, and look forward to working with the Board in my new role, deepening relationships, as well as building new ones, assisting patients and families as they adjust the sails, as well as supporting the endeavors that will be undertaken to make a brain tumor diagnosis less scary and ultimately, help find the cure.
For the past ten years, I have searched for the meaning behind all of this, and I am excited for this new beginning. First things first though, a trip to Newport and Bristol, the place where this adventure began.
This past Thursday, we made a visit to the Yale Brain Tumor Center to present the net proceeds of our fundraiser. The majority of hospital visits are not fun, but this day is always filled with smiles because of the hope that it inspires. The collaboration between Yale and my family is truly special and something that I know each of us takes to heart. I cannot thank my family and friends who helped to make this year such a huge success and cannot wait to top it in 2018 as we celebrate my 10th anniversary!
Thank you, Wise Old Moon, for headlining this event and for your enthusiasm to be a part of this event the past two years. I wish to again thank our corporate sponsors – ShelfSpace Marketing, LLC; Carla’s Pasta; Specialty Packaging; Al Mac Motors; Beirne Wealth Consulting; Sullivan & LeShane, Public Relations; iHeart Radio; WTNH; Stop & Shop; Bank of Montreal; People’s Bank; Connecticut Public Broadcasting Network/CPTV; Edge Technology; Unitas Club; Updike, Kelly & Spellacy, P.C.; Henry, Raymond & Thompson; Guida’s Dairy; Blum Shapiro; Sardilli Produce; Webster Bank; and Russo, Russo & Slania, P.C. Thank you Shoreline Cafe & Catering and Beach Donuts for donating the sandwiches, donuts and coffee! To every individual and company that donated items to our raffle and silent auction, your support is appreciated. And last but not least, thank you Stony Creek Brewery for being an awesome partner in this venture. The support and awareness that you are bringing to brain tumors is amazing and appreciated by everyone affected by this diagnosis.
Through everyone’s efforts, a grand total of $42,800 was donated to the Yale Brain Tumor Center this year! As a survivor of this diagnosis, with my family and friends who wanted to help my doctor and his team in some way, I am in awe that between our four concerts and the donation from the Denver Foundation, we have donated $156,650.00 in four years! The money we have donated thus far has been used as seed funding to help doctors and residents take their research efforts from concepts into reality.
To date, there has been a dedicated undertaking to understand more about the triggers of particular brain tumors and their drivers. Research is also ongoing to develop nanotechnology to safely administer viruses to particular tumors to destroy the cancer cells, but without harming the brain.
Additionally, within the next six months, Yale will be publishing a study of great interest to my family and I. A couple of years ago, I was contacted by a resident at Yale who was studying the genetic drivers of central neurocytoma. I donated a blood sample and a piece of my tumor was obtained by the lab to understand the cause of this mutation. The Chair of Neurosurgery at Yale is overseeing this study and shared this status update with me. I plan to meet with him and the resident working on this study to learn more about their findings before the paper is published and I will share these updates at a later date, as well as the resident’s thesis. What was told to us, and which comes as no surprise to any of us, is that this tumor type is vastly different from any other tumor and does not share many commonalities.
Life is unpredictable. This is not even something you can conjure up in a dream, but if you had, and told me it would happen to me, I would have said “no way”. Yet, it did happen and I survived and because of it, I am a better person. I have a new outlook on life and a new normal.
That double vision nine years ago – it all makes perfect sense now.
What can I say! I am humbled and blown away by the outpouring of love and support from so many. To our Annual and Presenting Sponsors ShelfSpace Marketing, Carla’s Pasta and Specialty Packaging LLC. for making this night the best yet! A HUGE thanks to Renee DiNino and iHeartRadio for being our emcee and giving us amazing coverage! A very special thank you to Sullivan & LeShane Public Relations, Inc. and WTNH News 8 for sponsoring and bringing great awareness to this cause. And while the list is too long, a big thank you to all of our sponsors who made the night possible and enabled us to pull this off. Thank you Stony Creek Beer for hosting us again and your support during the month of September – you guys are great!
Nine years ago, I never would have thought I would want to talk about brain tumors, let alone that I would find it my passion. As my doctor told you last night, I am cured of this and now it is my opportunity to give back and aid doctors and researchers find the cure, but to also be a ray of hope for those fighting this battle. Fortunately, we are on our way.
While we are not ready to share an exact dollar amount, I am pleased to share that we shattered last year’s efforts!! Together, we took another step forward in helping doctors at Yale find the cure and I believe we will see the day. And if you thought last night was a great time, get ready to celebrate my 10 years of survivorship in 2018!! Get ready Cusano clan!
“Adversity. We cannot direct the wind, but we can adjust the sails.”
After 9 years of making adjustments and coping with bad news that seemed as though it would never end, today, I am victorious.
I spent the morning at Yale for an MRI. As I laid in the noisy tube, I reflected on the past nine years and thought about what my life would be like if the scan was clear and the tumor truly was gone for good. For nearly one-third of my life, I have made trips to Yale for surgeries, appointments, having staples removed, and MRI’s that ranged from 3 months to one year. Going in today, and as I laid there humming to the tapping noises emanating from the machine, I knew there was the distinct possibility that this life experience could be a thing of the past after my appointment with my doctor. But I take nothing for granted these days, including Ashley, my best friend and the one who has been there with me every step of the day since day one, when I called her after receiving this horrifying diagnosis.
Together, we stalled in the cafeteria until my appointment. Soon after, we went up to the consultation room, he walked in and delivered the news…
“Your brain looks pristine! Everything looks great!” He was pretty confident after the last scan that this would be the case and reminded me that he was pretty aggressive during the last surgery, so he was not entirely surprised. I thought I was dreaming, albeit a happy dream. Logically, the question “What should our plan be going forward?” was presented. After a brief discussion, it was decided that I do not need another MRI for 2 YEARS. Yes, you read that correctly! If I ever need anything though, I’ll know where to find him.
I have not fully digested this news yet, and it has not quite sunk in. Fortunately, this chapter of my life appears to have drawn to a close – and I don’t say this lightly. This battle has not been mine
to bear alone, but that of my family as well – and without all of their support, I would not be here, writing to you. They have played such an instrumental part in my recovery and never once stopped believing in me, nor allowed me to give up on myself or dreams.
I look forward to many more years of health and sharing my stories of hope, courage and inspiration with each of you.
Here we are yet again – visiting, decorating, shopping and wrapping, all while maintaining a work-life balance. It wouldn’t be the Christmas season without a little bit of added stress – and Coddington chewing Santa. Last December, I wrote about enjoying the moment and enjoying the holidays, and I have frequently preached the same idea.
Despite all of my own advice, I am one of the worst violators at times. Sure, I can chalk it up to eight years of MRIs, surgeries and seizures, experiencing let down after let down in the pursuit of my career, but the reality is that I have failed to count my blessings. Life could have went in a very different direction for me in a heartbeat, but for whatever the reason, that wasn’t the plan. No one is expected to be the epitome of a carefree, happy person 24/7, but, as I am reminded by Ashley, I have a lot to be grateful for this holiday season and every day – maybe like my friend Ebenezer I’ve been visited by the Ghosts of Christmas past, present and future in my sleep last night, because today it has suddenly become so clear. With my perceived troubles, it is easy for me to forget how well things turned out for me.
Life is not guaranteed and there is simply no time to be down in the dumps. This Christmas season and the beginning of the year is a time to start taking the advice I constantly dole out to others. I’m not looking back.
On Monday night before the Ravens and Patriots squared off, ESPN opened the broadcast with a story that hit home. My social media news feed was subsequently filled with the story of an amazing fighter from here in Connecticut battling brain cancer. I cried as I watched this video, as I was overcome by profound sadness for Logan and his family. As a Giants fan – thank you Tom Brady for helping to make this fan’s wish come true and the doctors at CCMC for giving him his own “# 12.” I am praying for Logan and his family during the days ahead. http://www.espn.com/video/clip?id=18266035.
As I watched this story, I was reminded once again just how lucky I am. This one got me. I am determined to live the renewed lease on life that I was given.
Here I am, eight years removed from what could have been, but I cannot find happiness on a day-to-day basis, all for no good reason. No more though. I am going to live, love, laugh and smile more.
Finish your shopping and wrapping. Enjoy the company of family and friends. But find time to laugh and smile more – not just around Christmastime, but all year long. As the late, great Ray Charles said:
All the kin folk gather round The lovely Christmas tree Hearts are glowing full of joy Sense the gifts that we’re giving And the love that we’re living Why can’t it remain Oh all through the year Each day the same that’s what I wanna hear I’ll tell ya It’s truly amazin’ That spirit of Christmas
Well friends – the day has come where I can FINALLY share with you the success of Playing for the Cure: Brainstormin’. The timing is good as the news has been very negative of late, no matter which party you affiliate with. So let me cut right to the chase and end the anticipation…
Along with my family and friends, we returned to Yale today on a happy occasion. No MRI, no office visit – instead, we went with a check in hand with the net proceeds and I am ecstatic to share with you that, this year’s donation was $37,250.00!
As I handed over the check and in my remarks, I had a moment of reflection. As I told Dr. Piepmeier and his fellow neurosurgeons, as well as the staff at the Yale Brain Tumor Center, but for them and without their support and care for me, as well as the assurances provided to my family, I would not be here and my family would not be giving their time year after year to raise money to support their research efforts. It truly is a labor of love. “Its a full time job, the work’s never done. Twenty-four seven, it’s a labor of love.”
I have said it before, and I’m going to repeat it here. But for our sponsors and all of those who contributed and helped to make this year such a success, today’s donation never would have been possible. Thank you again to our sponsors – ShelfSpace Marketing, LLC, Carla’s Pasta, Specialty Packaging, Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C., Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH. A huge shout out to Stony Creek Brewery for not only working with us to make this event run so smoothly, but for your extremely generous contribution toward the fund. And to every single person who came out to share in the night and celebrate with us as we raised money to help find the cure, thank you.
Going into 2016, my goal was $20,000. But by early June, after the sponsorship letters were sent out and the checks started rolling in, I upped the goal to $25,000. Yet never did I imagine, or envision, being able to hand over this sum of money, but let me tell you – I am so proud to do so, and cannot express how grateful I am for each and every one of you!
Today, Dr. Piepmeier shared his continued plans for use of this money, and this includes investing this money into various research projects that he hopes will lead to breakthroughs in treatment options, as well genetic testing.
Together, with the support of the Yale Brain Tumor Center and other facilities throughout the world, the cure to brain tumors will be found. However, until that time, I remain committed to putting together this fundraiser for Yale as a way of saying “thanks” for saving my life and giving me a second chance at living.
I am forever grateful for my family and friends who got me through these dark days and allowed me to pick myself back up and continued on with my life. But I am also thankful that you have helped me to explore and find my passion, and that is being an active part of the brain tumor community.
Last week, over 700 brain tumor patients, survivors, caregivers, family, friends and doctors walked and ran in the Path of Hope, a 5K to benefit the CTBTA. As with all events, there were obstacles to overcome but that did not stop us. The new venue worked perfectly and I heard many great compliments. Additionally, we were faced with another event taking place on the same day and at the same location, but this too did not make an iota of a difference to our dedicated group of volunteers who adjusted to each punch thrown. I saw determination and a desire to make this event just as great, if not better, than the previous two years. Proudly, we can say, that goal was accomplished.
We had an impassioned speech from our President Emeritus and a beautiful rendition of the National Anthem. New this year was a true 5K timed run to give those who wanted that experience and it was a success. The walkers were located within the confines of the village and as each team came around the turn, I saw nothing but smiles, belief and hope.
The most incredible part of the entire of the day was witnessing the brain tumor community come together, and it is truly awesome to witness. Never could I have imagined that there would be this community, let alone people who wanted to come together and celebrate their journey in what they have overcome or are currently facing. Whether it was meeting Elli Haskes, a fifteen year old student whose mother passed away from brain cancer when she was five and who set up a table to collect items to create care packages for children whose parents have been diagnosed with a brain tumor, or Steve, an inspirational survivor whom would never let on that anything was wrong, and his caregiver Wendy, who radiates with positivity. And to greet all of the patients and survivors, there was Supercow, the very animal I named in the hospital when my parents asked me who my dog was. The handshakes, hugs and tears we exchanged are moments I will not forget and are the reason that I do this. Thank you all for being there.
When I think about all the time and work that went into the event by everyone involved, it was all worth it as I saw the joy that it brought to everyone. The day was about raising awareness of brain tumors and doing our part to help find the cure. It sounds odd, but there is truly something special when you have the chance to actually celebrate brain tumors with an amazing community of people whose lives have been affected by this awful disease.
Whether your tumor is malignant or benign, it is still a brain tumor and the effects are equally as devastating. The best advice that I was given, and which I now give to you is simple.
Take it “one step at a time.” There is not a day that does not go by where I do not think about it, or reflect upon how grateful I am, but to Ashley, my family, friends and all supporters – thank you for all you have done, and continue to do for me. You have allowed me to take this and turn it into something great, and I am grateful.
The third Playing for the Cure: Brainstormin’ is in the books and has truly set the bar higher for the future of this event. There is so much I want to talk about that it is difficult to determine where to begin. I know the number one question everyone wants answered is “how much was raised?” While I wish I could tell you, donations are still trickling in and the final accounting has not yet been completed; however, I am ecstatic to share that we have shattered the amounts donated the first two years! Thank you to each and every person who attended, bought raffle tickets, participated in silent auction, partook in the live auction and my lucky cousin Xander, hope you enjoy that scooter! A big thanks to you all!
The night would not have been possible without our annual sponsor ShelfSpace Marketing, LLC and our presenting sponsors Carla’s Pasta and Specialty Packaging. I was, and still am, in shock by what I witnessed. The lovely and wonderful Carla Squatrito, the Founder and President of Carla’s Pasta, surprised my family and I by chartering a bus of 40+ people to the event. Words alone cannot express how grateful and surprised I was for this support, and I know that I speak for my family as well, how greatly appreciated and generous this gesture was. Also joining us was Chris Orsini, the Managing Partner of Specialty Packaging, along with his wife, Linda. To both companies, I cannot express my sincere gratitude in helping to make this year the success that it was and for your show of support of this cause and dedication to helping find the cure.
Thank you Beirne Wealth Consulting, Edge Technology Services, Stop and Shop, Unitas Club, Sardilli Produce, iHeart Media, Henry, Raymond & Thompson, LLC, Liuzzi Gourmet Food Market, Guida’s Milk and Ice Cream, The Farmer’s Cow, Severance Foods, Updike, Kelly & Spellacy, P.C., Blum Shapiro, Al Mac Motors II, Channel 3 and WTNH: you made this night possible and are giving hope to those battling a brain tumor diagnosis. And to every single person and company who donated an item for the raffle or auction – THANK YOU! Also, a huge thank you to Jillian Shugrue who reached out to me and donated her photography skills and time to photograph (and video) the evening – you did an amazing job!
But what would the night have been without the music from the talented duo Ja2M and the awesome Wise Old Moon? Your time and skills were so greatly appreciated and I only hope that you enjoyed yourselves as much as everyone enjoyed your sounds. I hope it was evident from looking out into the crowd how much the crowd enjoyed you guys – I received many great compliments on both bands, so hats off to you! When I think of the future of this fundraiser, I have longed for a true “festival” with multiple bands and styles of music and you both got the ball rolling in that direction.
In addition, I’d like to thank and recognize Stony Creek Brewery, our host and tremendous partner in this fundraiser. I am humbled by your support and willingness to partner and work with us throughout the planning stages to the day-of coordination. Additionally, I would like to thank Ed and Ali for their extremely generous contribution during the month of September. You took me by complete surprise when you informed me of Charity Wednesdays for the month of September and never could I have imagined such a generous contribution and act of kindness. You were both so accommodating and great to work with – I thank you again, and look forward to next year.
Last but not least, and most importantly, a BIG thanks to the Yale Brain Tumor Center and especially, Dr. Piepmeier. As noted in his remarks, the morning of the concert, Yale went live with its new addition to the website intended to educate patients, survivors, caregivers and families. The addition of Brain Tumor Patient Education consists of a wealth of links and information put together by doctors, nurses and myself to assist and guide anyone diagnosed with a brain tumor, or their family, through this long journey. When I was released from the hospital in 2008, I had nowhere to turn nor anybody to talk to about what I was feeling. As I told the staff at Yale, they needed to give patients and families a place to turn to for answers to questions such as “where do I go from here?” and to provide them with an assurance that they are not alone and provide resources, and “Life After a Brain Tumor” should give some insight. Collectively, you all changed my life, as well as that of my family, and I could not be happier than to host this fundraiser for you. I am excited to discuss with you how you plan to use the money donated this year and what breakthroughs you think may be on the horizon, while further enhancing the website.
However, for me, the best part of the night was seeing and meeting fellow brain tumor warriors and survivors and their families. To be able to put a name to the face, or to meet someone for the very first time and hear their story and let them know that they too can get through these hard times is all that I strive for.
Fortunately for me, I am now cured of this tumor but that does not mean my battle against brain tumors is over.
Goodbye summer, hello fall. And as much as I enjoy summer, September is my favorite month – our anniversary, the start of Fall and cooler temperatures, football season, autumn leaves, etc. But fall also means that winter is just around the corner and that truly depresses me, UGH! So I look on the bright side – Brainstormin’ is just 15 days away! I would be lying if I said that I was not excited about what lies ahead in the immediate horizon, and in the coming months.
Tomorrow night, the CTBTA is hosting its second annual Night of Hope, a farm dinner at the beautiful Rosedale Farms & Vineyards in Simsbury. I have been to several farm-to-table dinners and by far, this was the best one I had ever been to, so the expectations for tomorrow are high! Also coming soon is the new website for the Yale Brain Tumor Center, which was a collaborative effort with nurses, care coordinators and doctors at Yale. Not long from now, this new website will be revealed and hopefully be a tool and be a resource for brain tumor patients, survivors and caregivers. Next week, the CTBTA reconvenes its business and we’re hosting brain tumor patients, survivors and caregivers for Brain Tumors and Cupcakes at NoRA’s Cupcakes in West Hartford, CT. We’ll also meet as a board to make our allocations to hospitals and brain tumor programs throughout the state. Then, in October, we’ll be walking on the Path of Hope, in a new location this year (Olde Mistick Village).
And of course, Brainstormin’ on September 16th. As some of you already know, we received another great surprise earlier this week when the owner of Stony Creek Brewery informed me of Charity Wednesdays at the brewery. To put it simply, every Wednesday, the brewery donates $1 per every beer sold to a designated charity. The idea proposed by Stony Creek was that, during the entire month of September, every Wednesday’s charity night would be designated to the Yale Brain Tumor Center to assist our fundraising efforts. Humbled and appreciative, I graciously accepted this idea, but more than anything, I am proud in knowing that the work I am doing is not going unnoticed. To be able to help the doctors and staff who saved my life so they can continue to develop research and continue saving lives means more than anything, and to see the generosity of businesses and individuals wanting to contribute is awe-inspiring. As I told Yale when I shared this news, never did I think that eight years ago, I would find anything positive in this whole experience, but everyday I continue to be amazed and inspired. Thank you Stony Creek Brewery for joining us as a partner in this quest to find the cure!
Thanks to all of our corporate and individual sponsors for your support. We are close to this year’s goal and remain hopeful to hit and surpass it, but we can still use your help. It is a night that you will not want to miss, so contact me for your ticket before they’re gone.
I look forward to seeing all of you on the 16th and encourage you to help find the cure by visiting Stony Creek on Wednesdays during the month of September. I also look forward to seeing you at some of our upcoming events as well!
Hope that everyone has been enjoying their summer, whatever you may be doing. But with the end of summer getting closer and closer, that means September is nearing. However, September brings Playing for the Cure: Brainstormin’ fifty days from today!
Thanks to all of our sponsors (special thanks to our annual sponsor ShelfSpace Marketing, LLC, as well as our presenting sponsors this year, Carla’s Pasta and Specialty Packaging), family, supporters and the committee assisting us this year, I am excited to announce that we have already surpassed the amount donated in each of the previous two years! With an exciting new venue, two great new bands and a tremendous raffle, the excitement is hard to contain. As you know, we are holding the concert in the celebration room of the Stony Creek Brewery. Gone are the days of drinking Pabst Blue Ribbon and on to their craft brews. And if beer is not your thing, they serve wine too. If you think you might be hungry, worry not because this year, we are including a $10 food voucher! Every weekend at the brewery, they have local food trucks come, so there will be something for everyone. The brewery has been great to work with and I am excited to see our event come to life there!
As mentioned in a previous post, our bands this year are Ja2M and Wise Old Moon. These bands are the perfect fit for this venue and are sure to please everyone in attendance. In addition, we have a tremendous raffle and auction full of awesome items donated by sponsors, friends and colleagues. Just to name some, we have two raffles: one for our grand prize, a 50cc gas street scooter, and the other raffle contains prizes such as a foursome of golf to play a round of 18 at one of two courses at Lyman Orchards, tickets to the Goodspeed Opera House, tickets to a UConn men’s basketball game, gift baskets, gift cards and many more. Some of our auction items include an Eli Manning autographed jersey and a dinner for eight at the winner’s house prepared by the chefs at Carla’s Pasta.
But most importantly, by coming or making a donation, you will be helping doctors, surgeons and researchers find the cure for brain tumors. To help a family and spare someone else having to go through what my family and I went through is what this is all about.
I’m not one to ask for much, but please, support this cause and come join us for a beer, some good tunes and some great food at the Stony Creek Brewery! Hope to see you in 50 days!
For tickets, email me at firstname.lastname@example.org