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Thank You For Being a Friend

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#2020.  Aside from 2008, this year has been the pits.  The struggles and difficulties all of us have faced continue to be a burden and we’re all hurting, so let’s hope these next three months go quickly and easily.

Nobody could have predicted the ever-changing landscape of the world we live in, but planning events and fundraising has been especially difficult.  Despite all of this adversity though, we reached our goal at Brainstormin’ thanks to the support of friends, family and the community!  Now on to the Path of Hope, albeit virtual this year, and we hope it will provide the same sense of community and togetherness as previous years.  There is still time to sign up!

Nonetheless, despite a global pandemic and civil unrest, brain tumors have not stopped and they will not stop until a cure is found, and neither will I.   Witnessing the strength and courage of the many patients and families I talk with on a weekly basis keeps me going and gives me the drive to do my part to offer assistance and provide a sounding board, but to also keep their spirits up and that hope alive.  Every day presents a new challenge, whether it is a last minute decision the day before our event to postpone due to weather so everyone can be outside, or planning a virtual 5K for the entire state of Connecticut, and for reasons such as these, finding time to write has escaped me and I apologize.  Fortunately, my family has come to my rescue and the entry below was penned by my parents – thank you, Mom and Dad.  Until next time…

As we told Chris, he has once again managed to steer the ship through adversity and roll with the punches.  

This past month has brought much reason to celebrate for Chris and our family.  We had another very successful Playing for the Cure: Brainstormin’ event at Stony Creek Brewery and appreciate all who supported again and helped Chris and the CTBTA reach their goal.  There were moments during the summer where Chris privately pondered canceling the event, but his commitment to the cause and the brain tumor community remained his driving force.  Seeing him give back and his desire to help others facing this disease gives us great pride.  He has come full circle, going from the patient to an advocate helping others.  There were hard decisions to make in planning the event though, including how many people to cap the event at to ensure each attendee felt safe and following the state’s evolving guidelines.  However, it wouldn’t be an event in which Chris was involved in without drama.  The day before the event, there were downpours and thunder and lightning in the forecast.   As my other son Stephen said following the event, Chris did his best Peyton Manning impression – he surveyed the field, stepped to the line and called an audible and then threw a touchdown in deciding to move the event to the next week without a hitch.  The evening was perfect and everyone raised a glass of Junebug and celebrated all who are fighting and remembering those we have lost.  It was a night to remember.  

The following night, Chris was honored as a 40 Under Forty by the Hartford Business Journal. 

This year’s theme was appropriately titled “Coping During Covid” and focused on each honoree’s perseverance despite the difficult environment caused by the coronavirus.  While we were sad that we could not join him and celebrate this accomplishment in typical fashion, we are very proud of his accomplishments and look forward to seeing what is in store next.  

We are thankful for each of you for being a friend to Karen and I, but to Chris as well.  As Chris said at Brainstormin’, one of the blessings in disguise about a brain tumor diagnosis are the friends you make along the way and we wholeheartedly agree.   Nobody should have to go through this journey alone and we are grateful for all your support and look forward to watching Chris continue to pay it forward with your love and support.  

Thank you, all.  

The Man

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I took last night to let the news sink in, or at least I tried to, but yesterday’s news brought too much excitement.  I knew the day would come and I was optimistic, but I have still yet to process it.  Yes, yesterday I received the best news ever from my medical team at Yale .  After 11 long years of battling this beast, starting at age 24 which required 5 surgeries, radiation, an onset of seizures and pretty much uprooting my life and changing the course of my career, albeit I am grateful – I am officially “tumor free!”

Upon seeing my doctor walk into the room, my heart sank and I got a pit in my stomach, fearing something was wrong.  Fortunately, that was a fleeting fear as he quickly sported a big smile, proudly pronouncing “It’s gone, my friend!”  Simultaneously, Ashley and I both exhaled a big sigh of relief as smiles ran across our faces.  In an instant, the realization that I had won the battle set in because though my tumor was benign, given its chemical makeup and the history, I knew there was always a chance.   Yesterday however, those fears vanished when I heard he was 100% confident and certain that the tumor is gone forever and looking at the scan myself, seeing nothing but brain and a working shunt, a song ran through my head:

“Somewhere I heard that life is a test
I been through the worst but I still give my best
God made my mold different from the rest
Then he broke that mold so I know I’m blessed”

For more than a decade, my life has been anything but ordinary as I was always hesitant and wondering “what if.”  But now that I know I have five years and with the best doctor out there, I  know this is behind me and I owe it to you, especially my parents.  You have all supported me in the darkest of times, when I thought I would never recover to be able to speak, read or write again, or that I would ever regain the strength lost on one side of my body, and for that I am forever grateful.  So to show my gratitude, I am resolved to pay it forward and help anyone fighting this diagnosis and in need through the Connecticut Brain Tumor Alliance.

When I first joined the CTBTA, I was fortunate to meet Tracey, Greg, Jen, Andy, Stacey, Ron, Kim H., Susan, David, KC, Maria, KPD and Terry.  Since then, the Board and organization has grown and new members have joined, as has our footprint and impact on the state.  But I want to recognize the founding members for taking the chance in starting this organization so that patients, such as myself, don’t have to battle this alone.  I am incredibly grateful for the introduction to you and thank you for embracing me with open arms, welcoming me to the Board and allowing me to rise the ranks to your Executive Director.   Together, we can and will, make Connecticut a center of excellence in brain tumor care and be the resource that new patients and families need.

Thank you all, from the bottom of my heart.  So as one chapter closes, a new one begins…

Luck Be A Lady

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Life is unpredictable.

As my childhood habit of walking around with a briefcase clearly indicated, my career path was assumed from the beginning.  My high school job at a law firm, political science degree from UConn and  admission into law school only solidified my determination.  Well, surprise, surprise.   A brain tumor, a few failed attempts at the bar exam and a new-found interest in fundraising later, I found myself walking out of the law firm I worked at since I was 16 for the last time.

For my readers who do not already know, I recently joined the United Way as a partnership manager in development.  I am grateful to my former employer for taking a chance on me as a junior in high school and grooming me to succeed in anything I set my mind to.  Through my ups and downs and all of the trials and tribulations, they supported and encouraged me.  Who knows though, maybe it was meant to be?

During my first few weeks at the United Way, a lady stopped by and after her second visit, left me literally speechless.  She was not there to give me business or build upon a relationship though; her red and black outfit gave her away, my ladybug was back.  Her first appearance was when my office neighbor walked in and showed me who flew onto her hand – not even knowing my story or the connection.  The next week, there she was again, perfectly propped on the wall.

Immediately, any second thoughts melted away and I knew that this was a sign that I had made the correct move for my career.  Prior to accepting this position, I knew that a career change was necessary and would allow me to fulfill my purpose in life.  But giving up something that I had worked so hard for and that this story is so connected to was difficult.  Yet, her presence in the office gave me the assurance I needed.

The change from the private sector to the nonprofit world has been difficult at times and the road to mastering the skill set I need to succeed will be long and challenging.  However, I am eager to make a philanthropic impact on my community and to simultaneously fine-tune my ability to have a personal impact on the brain tumor community to help all the doctors, researchers and nurses who care for patients.

I have not had the opportunity to meet with the department Chair or the resident overseeing the study on central neurocytoma at Yale, but am eager and excited to see what they have learned.  I am humbled that in 2018, ten years after my diagnosis, a study will be published and a resource available for the next patient diagnosed with this very rare tumor.  Through the Cusano Family Brain Tumor Fund and through the many donations received from my readers, we are funding this important research study and collecting samples from another major university.  Back when I was diagnosed, there was not an abundance of information on this rare tumor.  Gratefully, we are on the brink of making this a reality.

My passion and pursuit to help those in need will not stop here though.  I trust that the skills I develop in my new position will allow me to make a greater impact and give hope for anyone diagnosed or who is facing this dreaded diagnosis.

Everything happens for a reason and I am content with where I am.  Though it took me nine years to come to this realization, I understand and believe that I am not an attorney for a reason and that I got sick so that I can help people.  More than anything though, I thank the ladybug for making her appearances and assuring me that this was the right move and for her continued presence in my life.

Don’t Stop Believin’

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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

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Chip,

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.

Father and Son

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As Father’s Day approaches, I decided to change things up a bit and celebrate my dad in the best way I know how – and that is to dedicate this post to him.  You may recall A Man’s Best Friend.  That post, written by my dad, reflects on my first surgery and the turmoil my family faced during that time.  Now, I return the favor and share some happier memories.

For those of you who have the privilege of knowing him, you likely think that his favorite thing is food.  I’m not going to lie, he enjoys it.  After all, he has taken the snack food industry by storm and has done some remarkable things with various companies.  However, I can tell you, as his son and growing up under his roof, that his favorite things are his wife, kids and grandson, trusty dog Chip, son-in-law, daughter-in-law and extended family.  A true family man.

There are countless memories that I can share with you, but there is one memory which I will always treasure and I know that he agrees.

The year was 1999 and the UConn men’s basketball team had just advanced to its first ever Final Four.  I was just a freshman in high school, but already had my sights set on UConn as my college of choice.  My dad is an avid fan as well and enjoys watching the games, so when UConn secured its ticket to the final four, the decision was easy – off to Tampa Bay we would go.

Going into the weekend, I remember being so confident and optimistic of the team’s chances.  I knew in my heart that they would return to Connecticut as champions.  My dad was hopeful, but not as confident.

In the national semifinals that Saturday, UConn defeated Ohio State and Duke beat Michigan State.  The final game of the season was set – UConn would play Duke for the National Championship.

On Sunday, excitement, anticipation and worry sank in.  There was a buzz around Tampa Bay, basically crowning Duke as the champions.  UConn entered the game as 9.5 point underdogs – that was quite the spread for a championship game.  After all, this was UConn’s first ever final four appearance and Duke played the 1999 season like a seasoned professional.  Regardless of the odds though, I was probably the only person who actually believed they would win.  As my dad was saying “I hope they win and think they have a shot, but they need to play their best game of the season and I think they are capable, so we’ll see.”

My dad and I spent that day talking about basketball and acting as if we were analysts.  The atmosphere was electric – on the beach, there were artists drawing the two school’s logos in the sand; television and media coverage everywhere you looked; pep bands playing the school’s fight songs; and just an overall great feeling.  As the time continued to pass and the sun set, Monday was shaping up to be a pretty special day.

When the game began, there was an overwhelming sense in the crowd, other than by UConn fans, that this game would be a blowout win for Duke.  I had Duke fans to my immediate left and we exchanged cheers and excitement throughout the game.  At halftime, UConn trailed by 2 points and nerves were settling in.  But they kept pace and as my dad said to me “it’ll come down to the final minute and whoever has the ball last will win this game.”  Sure enough, it did.

I can remember it like yesterday: with nine seconds left, UConn was up 75-74 and Trajan Langdan of Duke was driving to the basket and was whistled for traveling.  At the other end, the inbound went to Khalid El-Amin.   He was immediately fouled and stood at the free throw line to shoot two free throws – he hit the first and the second, which left Duke about 5 seconds to get down the floor and tie the game.  In what felt like the longest five seconds of my life, I nervously watched as Duke rushed down the court and with seconds to spare, Trajan Langdan approached the three point arch and then tripped and failed to get a shot off.   With that, the final buzzer sounded and UConn had done it!  As El-Amin shouted into the camera “we shocked the world!”  IMG_1714UConn was the national champion, ending Duke’s 32-game win streak.

The Trop turned into pandamonium.  The Duke fans were stunned and the UConn fans were jubilant.  The excitement of that game never wore off and brought my dad and I closer as father and son.  We talked about it for days and months, and still do.

For my thirtieth birthday, he handed me this card, along with a wrapped box:
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In 1999, my dad received one of the championship rings that the team received for his support of the university and I had always admired it.  Inside of the wrapped box was a UConn themed jewelry box which plays the UConn fight song and the ring.  I wear it on special occasions only, and when I do, I am instantly brought back to that weekend.  Those memories will will live with me forever, also.

That weekend is the epitome of who my father is.  The rock of our family and the person that my family and I can always turn to for support.  When my mother was diagnosed with cancer, he asked God for a sign and a maple leaf fell into his hand; when I was brought back to Yale in the midst of my misery for neurospychological testing, he again asked for a sign that I would get through this and the ladybug appeared and stayed with him for hours.  He will do anything for his family and children and I know that I speak for my family when I say how lucky we are.

When I think back on those results of the neuropsych tests, I find similarities to the 1999 Final Four weekend.  Just as he was uncertain, but hopeful that UConn would win, when we learned the results of my testing and contemplated the shunt surgery, he was again cautious, yet optimistic.   In both cases, he certainly could not have expected the miracle that occurred.  Yet, he and the ladybug assured my family and I that I would show improvement.  He knew I had a fighting chance that I could regain my cognitive functions, but was not making any guarantees as to when. Talk about “shocking the world”!

Happy Father’s Day, Dad!  Thanks for everything!

Love,
Chris

Hey Pretty Lady Won’t You Give Me A Sign?

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The summer was moving right along and the days were creeping closer to my 2L year.  The date was now August 15, 2008 – exactly one month after being sent home. Yet, at the recommendation of my neurosurgeon, I was sent back to Yale for neuropsychological testing.

While I have never told anyone this before, the entire process of neuropsych testing was my lowest point.  Law school exams had suddenly felt easy – the stakes now were far too high and I was terrified the entire day.  And while I was unable to appreciate at that time the significance of what the testing meant, I somehow knew it was a major point in my recovery if I wanted to resume the life I knew and get back to school in a few weeks – because I was going back.  Maybe I was naïve or I was just stubborn, but I somehow believed this was not just a fleeting thought.

So, what is neuropsych testing?  As defined by the Yale Medical Group, neuropsychology is a “clinical service that provides in-depth evaluations of various brain functions including attention, impulse control, problem solving, memory, language, visual perception, sensory-motor skills, intelligence and emotions.” The entire process is designed to test mental ability and I was being tested to see “where” I was on a cognitive scale.

After the initial introductions and the ice broken, my parents got up and left me…alone….and helpless. I felt like a dog being left behind in a kennel – “please, no – don’t leave me here!”  Well, I reasoned that the sooner he can examine me and I can get this over with, I can go home and daydream some more.

The questions came fast…and furious.   It’s insane though – as he was asking me the questions, I heard every word asked and understood what he was saying, but could not establish the connection between the question and my response.  That was the entire problem and what the doctors were afraid I had permanently lost.  I gave my best effort to answer, but my speech was slow.  The report noted that it was “effortful” and further that my responses contained paraphasic errors.  Throughout the morning, the doctor and his assistant would read an entire page of text to me and then proceed to ask me questions about it, such as “what was the theme?” or “can you repeat the sentence I just read to you?”

I gathered myself for a moment, tried real hard to respond but could not get the words I was searching for out of my mouth.  Once again, I felt like a complete failure.  I loved the timed questions though.  I recall one series where I was told a word and I was asked to provide a word that is similar.  Yes, this is something you likely practiced in third grade, but today, my goal was to practice synonyms.

During my lunch break that day, I was so distraught and upset with myself, and the person I had become.  I called home and just cried to my family.  The sound of concern in my parents’ voice was palpable and I instantly knew that their worst nightmare had come true – I was not doing well and the doctors’ fears were being confirmed.  Nonetheless, being unable to be there and provide a smile and a pat on the back, they consoled me and encouraged me to go back in there and do my best, just as I had always done.  And with that, I returned to the testing area for the remainder of the afternoon.  But today – and possibly forever more – my best was not good enough.

I later learned that after my phone call, my parents had a life-changing experience whereby they knew everything was going to be alright for me.

Do you believe in fate, destiny, do you believe that things happen for a reason, do you pray when things get difficult, do you believe in God?  I do.

After we dropped Chris off, we could do nothing other then think about the testing and the latest chapter of his ordeal.  The word aphasia was always whispered, and now the fear was that the diagnosis was going to be official.  After Chris called that afternoon and cried through his lunch break, Karen and I became extremely emotional and sad and cried for him.  At that moment, our son Stephen came home from his high school football workout and said he was starving.  I composed myself and decided to light the gas grill and cook him some lunch.  While cooking, I began to pray.  I prayed for a miracle…I prayed that Chris would be okay…I prayed that God would give me this cross to bear and take it off of Chris’ shoulders…I prayed for a sign that he was going to be okay.

Moments later, I heard a slight flutter in my right ear.  Glancing to the right, I saw that a ladybug had landed on my shoulder and was just sitting there.  If you believe like I do, she was my sign.  That ladybug sat on my shoulder from 12:45 until I got into the car to pick up Chris at 3:30.  As I got into the car I “released” her and as she flew off, I had an overwhelming feeling of confidence and peace.  In my soul at that moment I knew he was going to be okay.

Back to the testing room, as the sun began to set, the responses to the questions were not coming any easier to me and I was still struggling, if not performing worse.  I had just let myself down when I had the opportunity to shine and prove everyone wrong.  But I guess everyone else was right.

The report notes that “the nature of his language deficits (e.g. non-fluent spontaneous speech, word finding difficulties, poor confrontational naming, impaired oral and written expression) in the context of relatively preserved oral and written comprehension and intact sentence repetition abilities is consistent with the syndrome of a non-fluent, transcortical motor aphasia.”  And there it was – everyone’s worst fears right on paper.  Widely suspected but not confirmed until today, I had aphasia (a condition affecting brain injury and stroke patients’ ability to use or understand words).

How would I get through this and where do I go from here?  The ride home felt like an eternity and I had never felt so defeated before in my life.  How did this all happen to me?

A few days later, a copy of the report was provided and my parents broke the news to me…Untitled

…I was not going back to law school.