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.
“Chris, you have a very large brain tumor, we think it is benign and the pathology will confirm it. We need to get you into surgery tomorrow.”
What the hell did this mean? All of this medical jargon was being thrown at my family and I and we had no clue where to turn or what was happening. In the matter of minutes, I heard about the plans for the operation, the estimates of my prognosis, what to expect after surgery and rehab. I was told that the tumor most likely was a neurocytoma, but that in and of itself meant nothing to me. All I heard was brain tumor. I heard that as long as there were no complications, I’d be home in a week and that I could resume the life I had grown accustomed to living. Along with my family, we tried to make sense out of all of these terms and to process what my life would be like after the surgery. However, what I learned very quickly is that there were no tools to guide us on this journey. Other than confident doctors and nurses, there is nothing that could adequately prepare you for brain surgery, especially in such a short amount of time. So as I told my surgeon all these years later, I wanted to help the brain tumor center at Yale in assisting the patients/families they treat there in creating a tool, a guide anyone in need on this journey so that nobody else has to go through the pain, the hardships, the trials and errors that my family and I endured over the next three months.
Over the past year, I have worked with a team from the Yale Brain Tumor Center in creating this very tool. While it is still very much a work in progress, I am thrilled by seeing this idea come to life and providing a resource to all who need it. On the Neurosurgery website of the Yale School of Medicine sits “Brain Tumor Patient Education“.
You will find facts about brain tumors, though not all types. You can read about what it’s like to “meet your team” for the first time, and this goes well beyond your surgeon and assistant. We have provided general information about the various types of treatment and have ensured that the content is presented in a way that anyone can read and comprehend it. We hear the word “surgery” but it’s so much more than an operation. There are the pre-surgery procedures a patient has to undergo; there are things a patient should know about during surgery; and finally, life after surgery. I am sure that reading this could be scary, but it has been put out there to help. I woke up from surgery and had great difficulties. My cognitive functions were gone and I was not expecting that. However, had I have had the chance to know about these things before hand, I would have at least been mentally prepared for the risk. You will also find information for radiation and chemotherapy here.
Finally, and most importantly for me, was the creation of “life after a brain tumor” to make for a wholly educated patient. There are helpful links that a patient and their caregiver can visit; resources such as local support; the latest on clinical trials; etc. Our team went so far as to break it down by life after a benign brain tumor; life after a malignant brain tumor; and life after a metastatic brain tumor. On each, you will find helpful information on everyday living – driving, work, surveillance (continuing MRIs), eating and drinking, nutrition, traveling, financial counseling, etc.
I am excited to continue working with this talented group of nurses and researchers in putting this “guide” together. While nothing on this site should be construed as medical advice or opinions, I do hope it is helpful for that newly diagnosed patient and/or family as they embark on this terrifying journey. I have met so many remarkable people who have undergone each of these different experiences, as well as the caregivers who live this battle with them. Hopefully, with this education, the journey will not seem so bad and you can be a little better prepared than we were.
I guess it is fitting that I write this post just before my first-ever one year MRI (as you’ll read, the intervals for followup varies on a case-by-case basis). Stay tuned for an update!
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.
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