Yahoo! It’s A Celebration

As we turned the calendar into January 2015, I was preparing for surgery, albeit confident.  I was confident that this surgery would be the final surgery that I would need in this seven-year battle to rid the beast once and for all.

As I went in for my MRI this past Friday almost a year later, I wondered about my scans and the status of my brain.  Had you told me at the start of 2015 that my follow-up scans would reveal that my brain was completely clear with no residual tumor and normal in appearance, I would’ve called you an eternal optimist.

However, after seven long years of my battle,  aging me like a fine bottle of Merlot, I thought I was going to spoil as my surgeon walked into his office where Ashley and I awaited him.  He came in with a look on his face that I’ve seen far too often (usually one with not so great news).  Yet, that face quickly turned into a great big smile as he delivered the news:

“Chris, today’s scans are the best images of your brain that I have ever seen!”

YES!  At that moment, I learned that my brain looked “as normal” as it can look, given all that it has gone through.  Of course, me being the fanatic of the human brain that I have become, I asked to see the scans.  He showed me several images, many of which were what he described as “normal” and unremarkable.  This was, for all intents and purposes, the first time we have seen my brain that looked like one you would see in a health book of healthy, human brain.  Let’s not mention the void of empty space where he said he had to remove a vein.  But hey, I’m functioning, right?!

As he delivered this news, I realized that moment was the beginning of my “new normal”.  I was so excited and relieved to hear this news.  I prepared myself to hear that “while everything looks great, we want to watch this spot or that spot…”, or “we’ll continue to monitor this piece over here which we can radiate, if needed.”  But no, none of that happened.  So where do I go from here?

I’ll go back to Yale in six months for a follow-up scan, and then, if all goes well, we’ll try to push it to a year!  Wow, to think that I’d be so excited that seven years out, I’m excited to finally get to scans once-per-year is a crazy thought, but it’s one I gladly accept.

Receiving this news gives me the opportunity for the first time in a very long time to focus on other things that exclude my tumor and health.  I can focus on my family, myself and my career goals and getting to the point of where I’m comfortable in my life and have some grander opportunities down the road.   I will continue to raise money and be an advocate for this cause that I care so deeply for.  The possibilities are endless, but for sure, I will not have to worry about my brain tumor for a while.  I can even look forward to going back here!

The view from our hotel balcony in Venice, Italy
The view from our hotel balcony in Venice, Italy

Thank You, Friends

Every cloud has a silver lining.

If you would have asked me in 2008 whether I would find any positives in my diagnosis, I more than likely would have said “no chance.”

Amazingly though, as I sit here seven years later, I can say with absolute certainty, the answer to that question is a profound “yes!” At the time I was diagnosed in 2008, I was 24 years old and left wondering whether I would even make it through the surgery, never mind what my future would have in store.  Through the multiple ups and downs that I have faced since that day, I am standing prouder and taller than ever.  I have found my calling.

What I failed to realize in 2008 is how my diagnosis would change my life, and the lives of those around me, namely my family.  Yesterday, along with my wife and family, we went to Yale-New Haven Hospital and presented a check in the amount of $13,500.00.

Dr. Joseph Piepmeier with my brother Stephen and I.
Dr. Joseph Piepmeier with my brother Stephen and I.

Without each and every person who supported this event, attended the concert, donated to the fund or donated merchandise for our raffle, yesterday’s presentation of the check would not have been possible.  Because of you, we are providing hope to patients and their families dealing with this diagnosis.  With these monies, Dr. Piepmeier and researchers at Yale spoke of hope and possibility to better treat brain tumors.  He discussed his hope to develop a virus to destroy the tumor cells that can be injected directly into the tumor but while not harming the brain.  To think that this money can deliver those results brings a smile to my face, and should certainly bring one to yours also.

First and foremost, I thank Ashley and my family for supporting me in this quest and continuing to be there by my side  every step of the way.  Without you, none of this would be possible.

Next, a giant thank you to our sponsors.  Without your support, this would have never been possible.  I am humbled by your generosity and compassion.  I want to make a special mention to the “Rock Stars”, our corporate sponsors Carla’s Pasta and ShelfSpace Marketing, LLC.  THANK YOU!

I would be remiss to not mention each company who donated a raffle item – J. Christian’s, Omar Coffee Co., Arnold’s Jewelers, Libero Jewelers, The Max Restaurant Group, The University of Connecticut, Ted’s Auto, Precision Concepts and The Walter Camp Football Foundation.  The raffle raised about $2,500 of the $13,500.  Thank you for your support, dedication to this event and desire to assist in this quest.  Your generosity alone merits the grandest of recognition and I hope that you can feel the pride of knowing that you contributed in such a great way.

To the bands, Broca’s Area and Goodnight Blue Moon – absolutely amazing.   You entertained the crowd all night long and gave all of us, brain tumor patients included, a reason to smile and forget about life for a while.  As I mentioned in an earlier blog post, you made the night the success that it was.

I am thrilled to tell you that next year, we’re taking the concert to the Stoney Creek Brewery in Branford.  We tested the waters and now know that this event could be the success that we originally envisioned.

So what more can I say, other than: “Thank you, friends.  Wouldn’t be here if it wasn’t for you.”

Empty Chairs At Empty Tables

Despite how well I have been feeling of late, I cannot help feeling guilty.  Yes, I have survivor’s guilt.

2015 has been particularly difficult.  Whether it has been through social media or the evening news, we continue to hear about the tragic stories of those newly diagnosed.  And just during the  past couple of months alone, the Connecticut brain tumor community has lost two courageous warriors.  Through my involvement with the CT Brain Tumor Alliance, I am surrounded by stories of heartbreak and triumph.  Recently, I told you about Martin and Candice, two individuals who I had met through my involvement with this organization and I am proud to say that I live a better life because of the two of them.   With a smile always on their face, they never allowed their diagnosis to bring them down.  Unfortunately, both lost their battles to their horrific disease.  Yet, I am still here.

I wish life were different.  The questions haunt me: why does someone with a benign tumor like the one I had, have such a different recovery and prognosis than I?  Why was my tumor benign while another person’s was cancerous?  I wish I had answers to these questions and as to why I am okay compared to others.  However, these are questions which nobody can, or ever will, be able to answer.  My pain and sadness for the victims and their loved ones makes me want to fight harder for them.  I often remind myself how lucky I am, but it does not take away the somber reminder of those who are less fortunate.  I am attempting to turn my tragedy into a positive.  If nothing else, it has allowed me to gain an entirely new perspective on life and what is truly important.

My role as a Director of the CTBTA becomes that much more important to me and I feel the pride when the Board goes to the various hospitals and research centers to present checks.  These monies are used to better assist research and treatments; to allow children to get into MRI machines without being scared; and providing for patient-assistance funds.  The opportunities that the hospitals are to present from our hard work brings a smile to my face, providing reassurances that I am taking part in a greater change for something good.

Nonetheless, I am quite certain that I will always be haunted by survivor’s guilt.  Saying goodbye to an acquaintance with this diagnosis will get harder and harder.   However, I believe that the best way to honor those who have passed from this disease is to continue fighting in their honor.  To try to bring something good out of this experience.  So when I hear about someone with a more difficult prognosis than myself, I will always be reminded by a sense of gratitude from my recovery and how far I have come to fight on in the memory of those who have passed.

Turn the Record On, It’s Time For Something

Yes, I know I haven’t updated you on Playing for the Cure: Brainstormin’, but I needed some time.  Time to relax and recover.  Time to enjoy the fruits of our labor and allow for donations continue to come in supporting this cause.  Time to finalize the details for the Path of Hope, a 5K Journey to Benefit the Connecticut Brain Tumor Alliance and enjoy in its success.  But also time to reflect on life and the fortunes I’ve been blessed with.

Let’s start with the concert.  If you were to ask me to summarize it in one word, I’d say “exhilarating”.

For those of you who attended and/or contributed, thank you!  I am elated to announce that, through our joint efforts with our sponsors and everyone who donated and came out to celebrate the night, we have surpassed last year’s donation for The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.   I am saving announcing the grand total until we have presented the check to Yale, but we are all very excited!  This money will go towards research (such as developing a virus that is injected into the brain to kill the cancer cells without harming the brain), clinical trials, DSC_0627 less invasive methods to treat the tumor, and beyond.

It was a night full of hope and inspiration.  We had terrific bands.  There was a raffle with amazing prizes donated from local businesses, family and friends.  I had the opportunity to meet the mother of a brain cancer patient with whom I connected previously on social media and was inspired by her words and drive to fight.  A fellow brain tumor patient, Aisha Khan, also from North Haven, came to show her support of the cause and is an avid fan of Broca’s Area.  Prior to the concert, my parents’ neighbor let them know he was unable to attend this year, but wished to purchase raffle tickets and instructed them that if he won, to have me donate his prize to a brain tumor patient or survivor.  When my parents arrived at the venue that night and told me this, I got goosebumps and felt proud knowing that we’re making a difference.  Sure enough, about halfway through the raffle, a ticket was pulled and I leaned toward the microphone and announced that the winner of this item was donating his winnings and I selected Aisha as the beneficiary of a $100 gift card donated by the Max Restaurant Group.

It’s the small things like this act of kindness that make the work and effort worth it all.

But it was also a night where I stood in the back of the room and took it all in.  I admired the hard work of my family and friends.  Watching in awe as something terrible has transpired into something so grand.  Along with my surgeon, we stood there and listened toDSC_0631 Goodnight Blue Moon.  With the first note the group sang, their vocal harmonies captured us all and their music was thoroughly enjoyed.  The band brought their merchandise to sell and graciously split their profit with The Cusano Family Brain Tumor Fund.  I purchased both CDs and have been listening to each nonstop.  “Thank you” Goodnight Blue Moon, hopefully you’ll be up for playing at next year’s show!  And a huge thank you to DSC_0633Broca’s Area for your continued support of this cause.  If you have not yet heard them play, I strongly encourage you to take a look at their schedule and catch them in an area near you.

Yet, in the midst of writing this post, the brain tumor community lost yet another truly remarkable, inspirational and brave individual to this awful disease.  Candice and I met via social media a couple of years ago and have connected at various CTBTA events.  She was a huge supporter of this concert and I.  Always with a smile on her face, she triumphantly marched on.  Sadly, last week, Candice lost her battle to brain cancer, but she lives on in my memory as an inspiration and another reason that I continue to fight on and organize this concert.

I am hopeful that next year, this concert will be even bigger and better, and I look forward to seeing new faces that I’ve never met before to connect and be a source of hope and inspiration.  And I would love for you to be the same for me.

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



Get every new post delivered to your Inbox.

Join 429 other followers

%d bloggers like this: