Don’t Stop Believin’

It’s go time!

Our fundraising concert is literally right around the corner and after a year of planning, hard work and preparation, the bands will begin their sound checks and the doors to the venue will open.  It will be, I am confident, another tremendous give back TCFBT flyer sizePlaying for the Cure: Brainstormin’ music festival.

Between now and then, I have one job – to continue to advocate for this event and encourage all of you to join my family and I on this special evening.

When I think about how all of this came to be and the reason that this concert is taking place, I think back to where I was in my life at the time I was diagnosed: I had just moved back home after my first year of law school with the hopes of eventually landing a job in government relations.  I enjoyed the challenges and the grind of working alongside my team the previous summer and educating the legislators on the important issues they were faced with.  However, none of this went as planned due to my situation.  Yet, over the past year, I have begun involving myself in these types of activities and taking a leadership role for issues I care about, namely becoming more involved with the brain tumor community.  I have started The Cusano Family Brain Tumor Fund to provide support to the doctors and researchers at the Yale Brain Tumor Center and am a Director of the CT Brain Tumor Alliance.  Being a part of these two groups offers me the opportunity to do exactly what an advocate of the brain tumor community does – raise awareness.

2014 check presentation to the Yale Brain Tumor Center
2014 check presentation to the Yale Brain Tumor Center

Last year, when we held our concert, none of us knew what to expect as it was our first go at this and we were entering uncharted territories.  But the response was overwhelming and appreciated by everyone who supported and attended the concert.  This year, we set the expectations higher.  Our goal surpasses what we gave last year and we remain optimistic that we will present a larger check than what we wrote last year.

But I am asking for a final time for your support and help to come out and make this night be what I know it can be.  Please, if you’re local to Hamden, Connecticut, mark it down in your calendar – this Saturday, September 19th at 6:30 for Goodnight Blue Moon and Broca’s Area.  If you follow Broca’s Area, you’ve heard a lot about their upcoming music video, and here is a sneak peek  of “That Way”: 

What else can I tell you?  We have tremendous raffle prizes including football tickets, gift baskets, gift cards to restaurants, a gift card for pistol permit classes, a men’s and women’s watch and the grand prize, a 2015 VIP50, 49cc, 4 stroke engine street scooter valued at over $1,000 , just to name a few.  And if you’re unable to attend but wish to support our efforts, any little bit will go a long way.

I hope to see all of my followers there and look forward to meeting new faces for a great cause!

Grazing In The Grass


Where do I begin?  You were a brother to myself, Jackie and Stephen, a son to Mom and Dad and you enjoyed a life full of love and character.  For the past fourteen years, you brought such joy, smiles and true companionship to all of us.  Mom sent me this picture taken of you last Tuesday – typical you!  IMG_1922You loved to roam and lay in the grass and never wanted to come in.  And now, I hope that you have found a lush patch of grass in Heaven that you can lay on permanently.  Thank you for always being such a loyal friend and companion to us all.

I have so many good memories with you that it is hard to pick which ones I want to tell you about.  I will always remember the day that we brought you home, how small you were.  I will never forget the countless hours that I spent with you when you first came home, lining up your food toward the bowl.  You would eat each piece one-by-one and then eventually, you would lick the bowl clean.  I will also always savor the times that you heard my car turn into the driveway and race to the door to anxiously sit there, waiting for me to come in and you would give me the best greeting ever.  Or how about car rides – you loved the feel of your ears and hair blowing in the wind.  And I know you’re a dog, but you loved beer and I hope they have some for you up there!  There were trips with us to the Christmas tree farm!  But for as long as I live, I will always remember the times spent on the couch when you jumped up and curled yourself into my lap.  I honestly don’t know who loved it more, you or I?

On July 1, 2008, I got the phone call with my MRI results.  Amidst the flurry of emotion that day, I neglected to give you your birthday present and I told Mom and Dad during my hospital stay that I was afraid I would never be going home and would potentially never see you again.  When I finally got home on July 15th, I cried from joy and euphoria and you were there to greet me.  I finally got to give you your birthday present!

Saturday morning, when Mom and Dad called me with the news, I went and sat on the deck to reflect on your life and the joy that you brought us over the past fourteen years.  As all of the happy and fun memories ran through my mind, I was overcome by emotion and I looked up at the sky and the sun and said a prayer for you.  By the time I looked back down at the table and opened my eyes, and with Ashley as my witness, there she IMG_1921was, just staring at me.  I was in shock and awe.  I know this was a sign from you, telling me that you were finally at peace after suffering for the past two months.  I began to cry some more because of the coincidence of seeing another ladybug in the time of need.  You sent us all the sign that we needed.  Another ladybug, another sign from above.  Just like Dad witnessed during my neuropsychological testing when he prayed for a sign that I would be okay, or when I went for my last MRI in April that there would no evidence of growth and the ladybug appeared in Dad’s office, this was my sign letting me know you were at peace.  A great reaffirmation that we made the right decision in designing the logo for the Cusano Family Brain Tumor Fund.

We will all miss you and always cherish the times spent with you.  You made our family better, and I thank you for that.  Rest in peace, Chip.

With A Little Help From My Friends

This entry was written by my father, Tony Cusano:

I remember the day we got the news like yesterday – the cause of the mysterious double vision would finally be known.  The phone rang and it was the call we had waited three long days for:

“Hi, Dr. Spector would like you to come in this afternoon – your results are in.”

As we were driving to his office, I did not have a good feeling.  The unknown was killing me and we needed an answer.   We walked right into his office and Dr. Spector did not pull any punches.

I heard the words that he was saying to Chris and I was hoping that it was a dream:  “Your MRI shows a massive tumor in the center of your brain.  Your brain has been pushed aside and your optic nerve is being crushed, thus the reason for your double vision.  You also have hydrocephalus, and quite honestly, I do not know how you are functioning.  I have already contacted the chief of neurosurgery at Yale and he and his doctors will be waiting for you when you arrive.”

I could not speak, there was no saliva in my mouth.  I felt my heart was racing and my legs suddenly felt very unstable.  I hugged Chris and we both cried but immediately, we went on the offensive.  After enduring the mysterious double vision and headaches, we now knew what we were fighting and I honestly believed that he was going to be alright.  The battle was excruciating, full of ups and downs with many more unknowns, and it will continue throughout Chris’ life.

I tell you this piece of the story again because my family and I have now chosen to continue to fight the war on brain tumors and brain cancer.  It is the reason that we now do these fundraisers.  If I can alleviate the pain that some other parent and child may have to go through by the efforts of these fundraisers, then all of this work is well worth it.

I have a new found respect for fundraisers and directors of corporate relations because fundraising is not an easy task.  No matter how noble the cause is asking for donations, raffle gifts, favors or attending an event, it is never easy.   We are all so busy with our own schedules and we all have our causes that we want to support.

But our cause is true in spirit.  We know the pain of this disease, and what it can do to the individual and the family.  One hundred percent of the money raised is donated to the Yale Brain Tumor Center where the money is used to promote better brain tumor treatment options and support clinical and laboratory research to find a cure for brain tumors.  It is nice to know where the money is going and what the doctors are doing with it in their efforts to learn about the tumors and stop the disease from affecting families like ours.

We are so close to our goal for this years event.  I thank all of our family, friends and business organizations who have donated this year and in the past, but additional support would go a long way in assisting now and in the future.   If you can make a donation, if you can donate a raffle gift, but most importantly if you can attend the concert on September 19th, we would greatly appreciate it.TCFBT flyer size


There Is A Light That Never Goes Out

The brain tumor community lost another warrior last week, Martin Syndomin.  I will always remember my first CTBTA walk meeting last year.  Along with Directors, volunteers, Ashley and I, there was Martin – I felt an immediate connection with him.  He was a young brain tumor survivor who worked in finance in New York City, but his passion was volunteering for the Connecticut Brain Tumor Alliance.  With the first ever Path of Hope last year, he was instrumental in assisting with the financials, registration site and site visits, among others.  But what stood out to me was his passion for just being there and lending an ear to myself and other new volunteers.  I remember him giving my wife and I the biggest hug after that first meeting – the most genuine and sincere “It’s so nice to meet you” I’ve ever experienced.  Martin, you will be sorely missed but your fight will carry on.  I can promise you that I will continue my pledge to help find the cure and develop new treatments in the fight against this terrible disease.

When we suffer the loss of someone, we often express our grief by saying our “hearts are heavy”.   It’s certainly an accurate description, however after Martin’s loss, I felt a little differently.  My heart is heavy, but it’s full.  Full of realization and fight.  Full of renewed energy to live a life others so valiantly lost.

There is a lot of current promise out there to make me feel like this is not some lofty, far-fetched hope.  I look at the work of the CTBTA; I look at the National Brain Tumor Society and the American Brain Tumor Association; I look at the work and promising research being conducted at the hospitals around Connecticut.  Great things are happening and it should leave brain tumor and brain cancer patients feeling hopeful.  Together, this all makes me believe that finding the cure is certainly within reach in the not too distant future.

And while as a community we are working to reach this goal, there is something we can all do a little better.  Appreciate.  Enjoy.  Smile.  Laugh.  Of course it’s not all perfect.  So when life hurts, cry.  Cry the ugly cry if you have to.  Don’t hold back on anything.

There’s no judge or jury needed.  I’m often guilty of zeroing in on nonsense, guilty of not truly living.

So, for me, for Martin, for everyone, I ask one thing.


You and Me

As a brain tumor survivor, I feel lucky and blessed to be alive.  I have been fortunate enough to return to work, getting to go out with friends and family and live my life worry free (for the most part).  But what I sometimes neglect to reflect upon is the stress and burdens placed on my primary caretaker, namely my loving and caring wife, Ashley.

ashley_chris_406I appreciate and recognize the struggles that she experienced, as well as the hardships that she will continue to endure as my primary caregiver.  While I am not in her shoes, it is only natural to worry.  And everyday, Ashley and I each find difficulty in managing our lives and finding happiness with all that we have going on such as finding success in our jobs, financial pressures, affording a quality of life with the rising costs of healthcare and simply juggling the added stresses of everyday life.  All of this sounds like a recipe for mental exhaustion.   Whether she experiences these stresses, I do not know as she has never told me, but I would not blame her for needing an outlet of her own.

Her and I both know that, for the rest of my life, I will have to continue to get yearly MRIs and be alert for changes to my cognitive functions.  Just because my tumor was removed and I am now “cured” in clinical terms does not guarantee success.  As I alluded to, a brain tumor diagnosis is a chronic issue.  Additionally, as previously stated, I am on anti-seizure medicine and likely will be for the rest of my life, but hearing her ask “Do you have any idea what it’s like for me to worry that every time you get in the car, you’ll have a seizure and I won’t be there to grab the wheel?”  destroys me.  However, the unfortunate truth is that I had a brain tumor and am on epileptic medications does not mean that I stop living; rather, I must and will carry on.  And for her, this means that she will unfortunately need to be burdened by these unintended consequences.

Just this past January, she took time off from her job to be with me as I recovered from surgery.  The comfort of knowing that she was here, in the house to guide and assist me in the recovery process was healing in and of itself.  Hearing her voice throughout the day was so comforting and kept me at ease.  From “I just can’t believe how good you look!” to “I’m so proud of you, you’re really doing great!” was music to my ears.  Always having her genuinely concerned was such a gratifying feeling, but I have come to expect nothing less from her.

As I learned throughout the years, there is a silver lining to all of this, and that is that I now that I will have her by my side as a source of comfort and support, and this simple fact makes me feel a thousand times better.

This is just the start for us.  Last year, we added our pride and joy Coddington to our family.

IMG_0913He could be the most energetic and playful dog I have ever encountered and brings just another smile to our faces (except when he chews holes into the couch), and I cannot wait to see what the future holds in store for us.

While I sincerely hope that the worst is now behind me, I cannot be certain but at least I can find comfort in knowing that if something were to again occur, I have the best caretaker ever right here with me.  In 2008, a few days after my second surgery for the hematoma, my parents brought me my phone so that I can read the abundance of messages from family and friends.  Yet, there was one email that stuck out to me, and that was from Ashley.

The email was simple, yet full of love and compassion.  She offered me the hope, spirit and drive needed to get better and recover.  If words could talk, these would be yelling.  Though I hated the fact that I could only lay in my bed while she visited, she saw something different.  I was not expecting to see the words “proud” and “brave” after our visit, but I did.  I was filled with joy when i read down further and saw that she wrote she’d like to come visit again soon, so long as I was okay with it.  To have the girl that I loved tell me after seeing me in such a grave state tell me to keep smiling and that she loves me made me the happiest guy ever.  From that moment on, I knew that I needed to get better and continue improving.  I was so disappointed that this had happened to me and I was lying in a hospital bed not knowing when I would have the opportunity, but I was determined.

Seven years later, I can say that I did it.  I am through the worst, but know that none of this would have been possible but for your support, guidance, friendship and love.  This is our story.

“You and me together, we could do anything, Baby
You and me together yeah, yeah
Two of us together, we could do anything, baby
You and me together yeah, yeah
Two of us together yeah, yeah
Two of us together, we could do anything, baby”

When You’re On A Holiday, You Can’t Find The Words To Say

Last week, Ashley and I were away on vacation and I had one goal in mind – to relax and forget about the everyday grind for a while.  Out of the gates, 2015 was fast and furious with the surgery for my regrowth, to returning to work everyday with an occasional “day off” for my followup doctors’ appointments.  It was definitely time.

We had kicked around some ideas of where to go, but we settled on the El Conquistador in Puerto Rico.  The resort is located in Fajardo, about 45 minutes outside of the bustling city of San Juan.  As you head up the driveway to the property, you are surrounded by sprawling acres of golf courses, tennis courts, palm trees and other natural vegetation.  Then suddenly, the resort appears right before your eyes.  Growing up, I have had the luxury of traveling to some great destinations over the years, and this one ranks up there with the greats.

Aside from being a phenomenal vacation, the trip also provided me with time to reflect on the past.  We left on July 2nd, which happened to be my seven-year “brainaversary”.  In comparison, these two days could not have been any more different.  This July 2nd, I was elated and jubilant; then, I was uneasy and wracked with emotions.  Two days later, on July 4th, Ashley and I watched a magnificent firework display from the balcony of the lobby with other guests of the resort.  And as I stood there watching IMG_3427the fireworks going off over the water, I had a flashback to July 4, 2008 while laying in my hospital bed watching the firework over the New Haven harbor.  I remembering enjoying that night, feeling happy with the prognosis I was given and the great strides I was making in my recovery, yet it was still difficult as a hospital was the last place I wanted to be that night.  The feeling I had this year is hard to describe, but there was a definite sense of joy and relief as I watched the fireworks right before my eyes over the waters of the Caribbean.  This was where I wanted to be and to have come so far made me proud.

Two days later, Ashley and I hopped on onto the first ferry over to Palomino Island, a private island owned by the resort.  Guests ride the high speed ferry from the marina to the island and within 15 minutes, you step off into another world. There was a definite calming sense from being one of the few people on an island in the middle of the ocean so early in the morning, but we wanted to pick the best spot we can find.  When we found our spot on the beach,IMG_1798 I took it all in; I found myself reflecting once again.  But I learned a few years ago that you need to realize that it is okay to reflect and actually process what you went through, so I did.  I went back to July 6, 2008.

Throughout the past seven years, this was the scariest day for everyone involved.  Ashley had been at the hospital with me on July 5th for a visit and we were all smiles.  Though I was unable to communicate with her at that time, I was so happy to have her by my side, spending time with me.  Not less than 12 hours later though, I was being rushed into the OR for emergency surgery.  I had done a complete 180 and was manifesting symptoms similar to a stroke.  The right side of my body had gone lifeless.  Would I make it out alive?  Would I have permanent side effects that would leave me a in a vegetative state?

Flash forward to the present day, I looked over to my left and there was Ashley, right by my side again.  I am so fortunate for her.  And as I stared at the aqua blue water, it was hard to believe that I had come this far.  I experienced a rush of gratitude to be so blessed to experience all that this beautiful life has to offer.  The beginning of the year proved that life isn’t always easy, but whether I’m preparing for surgery or floating in the Caribbean, isn’t it amazing to just be here?   To be fully functioning and experiencing each moment makes it all worth it.

It’s The Final Countdown

Playing for the Cure, Brainstormin’ is well underway!  We are less than 100 days away, and the excitement is building.  The bands and venue are booked, the date and time are confirmed, letters have been sent out and sponsorships are continuing to roll in.  A huge thanks so far to our corporate sponsors including the Hartford Courant, Carla’s Pasta, Stop & Shop, Gaylord Specialty Healthcare, ShelfSpace Marketing, LLC, Edge Technologies and the UNITAS Club of Hamden – just to name a few.  With all the support, we hope and expect to be able to surpass the $10,100 that we donated last year.  Even though the event is fast approaching, there is still time if you wish to support the cause.  And if you cannot attend, we have set up a site where you can make a donation.

The lineup of musical acts features Goodnight Blue Moon and Broca’s Area.  When we approached Goodnight Blue Moon, a successful bluegrass-meets-indie rock band, they eagerly jumped at the opportunity.   The band’s drummer, Nick D’Errico, is a longtime friend of mine and has shown my family and I a great deal of support since 2008.  He was also Stephen’s first drum teacher and an inspiration for him to study music and start Broca’s Area.   I am personally thrilled and honored to welcome Nick and Goodnight Blue Moon on the 19th and I hope that their fans in attendance will be inspired by our efforts with Yale and that this will be the start of a new long-lasting venture with the band.

Left to right: Mike Carabello, Mary Corso, Stephen Cusano, Ghazi Omair, and Leo Catricala (Broca’s Area)

The second act is Stephen’s band, Broca’s Area.  On June 17th, the Connecticut Music Awards were held at Infinity Music Hall and Bistro in Hartford.  With their infectious soul/hip-hop tracks, Broca’s Area  took home the awards for ‘Best New Band’ and ‘Best R&B/Soul/Funk’.  I know that I speak on behalf of Stephen and the band when I say thank you to everyone who voted for them.  The band members are beyond excited by their wins and have since been asked to headline a show at Infinity Music Hall.   If you attended last year’s show, you’ll know how talented they are and after another year of playing together, they continue to gel.

If Broca’s Area’s Connecticut Music Awards wins weren’t enough to make a big brother beam, I continue to be so proud and impressed by their commitment to the brain tumor community.

So please, SAVE THE DATE!  Come watch two fantastic bands and support this great cause on September 19, 2015 at 6:30p.m. at the Outer Space Ballroom in Hamden, CT.  Together, we can and will find the cure to brain tumors and brain cancer.


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