I’m Still Standing

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While the memories are distinct and clear, it was all such a blur and in an instant, my life had changed…

The phone rang and someone in the house had answered, it was the neuro-ophthalmologist and he asked us to come in immediately. When we arrived, he wasted no time and pulled no punches.

“Chris, your MRI showed a very large mass in the center of your brain. I’ve already contacted the chief of neurosurgery at Yale NH and he and his team are waiting for you.”

Today marks fifteen years since that fateful day and I have learned so much – about myself, but also about perseverance and realizing that not much else truly matters except for family, health and happiness. I will surely celebrate and enjoy the day, but I’d be remiss if I did not take this time to reflect and express my gratitude for life and all of you.

For far too long, I had taken life for granted. I set lofty goals for myself and was determined to achieve them, but you know the story, life had different plans for me. And all these years later, I now realize and can proudly say that this has been for the better and is oddly the best thing that could have happened to me.

I found my purpose in life and am grateful to wake up every day and help patients and families undergoing a brain tumor diagnosis. Although I am not a neurosurgeon or a neuro-oncologist, I get to take my experience and share that with patients and families in need of support and guidance. I suppose it is therapeutic, but I also think I enjoy getting to use my law degree in a non-traditional way of problem solving and getting good results, be it treatment or financial support. None of this was on my radar in 2008 as I was wheeled into the OR, but life led me to this point.

Through it all, the surgeries, gamma knife, countless MRIs and the feeling of hopelessness and despair, I’ve been blessed to have the greatest support system in my family and friends…I’m incredibly lucky. I still keep in touch with my neurosurgeon, who’s become a great friend to me, as well as the many nurses who cared for me. Again, had you told me this is what would happen back in 2008, I would’ve said you’re crazy. In my office, I have a box of all my stuff from 2008 – the flash cards, ABC board, homework from rehab, my progress reports, etc. Each July 2nd, I open that box and I flip through it all, and while I still laugh at most of homework assignments, reading the progress reports, especially the neuropsychologist’s reports still jars me.

Yet, here I am, stronger than ever.

So today, fifteen years since that dreadful day, I’m still standing and I believe that my best days are yet to come. I don’t have a crystal ball to know what life has in store for me next, but I know that because of this journey and all of the remarkable people who have played a part, “I got this,” just as I said to my family that ominous morning fifteen years ago.

Come Sail Away

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My apologies. It’s been a while since I’ve posted, and this has been intentional. I realized that I’ve just needed some time to unplug from this part of my life, but apparently, life is not as ready for me to be done with this journey just yet.

About a month ago, Ashley and I were sitting on the deck, drinking our coffee and watching the birds fly around the yard, in and out of their bird houses. However, something just didn’t look quite right – did she buy more bird houses?!

My worst nightmare had manifested itself again, but I wanted to give it a couple of days to see if was allergies or just a glitch with my eyes, so I let it go. If you’ve been following this blog, you know I could never be so lucky…

Back to the eye doctor I went. This is a new eye care center that I began going to last year and my doctor was not in the office on this particular day, so I saw someone new. She began to discuss the common causes of double vision, but I did most of the talking when I shared that this was not my first rodeo. Another possible explanation that is commonly seen is over-wearing of the contact lenses, which can lead eventually cause your eye to dry and contribute to double vision. “Let’s have a look!” she said. My left eye was extremely dry and the cornea had some scratching. But my right eye was perfect, and I wear contacts in both eyes for the same number of hours each day, so this really didn’t answer things for her.

We dove back into my medical history and the medications I am on. In 2019, at the young age of 35, I was diagnosed with glaucoma, a mystery in and of itself. To treat that, I am prescribed eye drops which I take twice per day.

“It’s possible the medication is causing the dry eye, but that’s an uncommon side effect of this medication, and it’s strange that it’s one eye only.”

“Let me take a look at something else” she said. Like a scene in a horror movie, my eyelids were then flipped up to get look at my lacrimal glands – these are what produce tears. The right eye was normal, but in the left eye, there was possible innervation damage to the lacrimal gland.

Neither of us actually said the words, but I know we were both thinking it – there was, and always will be, a possibility of a recurrence. It was suggested by the eye doctor that at my next MRI, I have imaging done of my orbits, to see the inner workings of my eyes. Another mystery to solve, and when I shared this news with my family, we all said “only me.”

With many thanks to the wonderful team at the team at Yale, they scheduled me an appointment and got me in for scans last week. Double vision, double scans. Normally, I have a brain scan but this time, we added a scan of the orbits to see the inner workings of my eyes.

I think I spent more time and energy trying to keep my family calm, assuring them this was going to be fine and if there was anything there, I’d deal with it. I guess when you have dealt with this for so long, you become numb to it a little bit?

That following Tuesday, we arrived at Yale for a 7am MRI and while I lay on the cold slab of metal with the awful noises and banging from the machine, the only thing I could focus on was trying to breathe through the COVID face mask and the metal frame an inch above my face. Within a few hours, I received the long-awaited call and heard the news I knew was coming – you have a beautiful brain and the shunt is doing what it’s supposed to do. These words were such a relief to hear, but it led to the next question – why am I still seeing double then? Time will tell, as I am seeing a neuro-ophthalmologist this coming week.

None of this surprises me though – this has been the story of my life for the past fourteen years, and like everything I’ve been though, I’ll get through this and as the winds come, I will just keep adjusting the sails.

Recently, I was asked how this diagnosed changed me and I could tell by the look on the questioner’s face that my answer surprised her, but it was the honest truth. “It has been a hellish journey, but going through what I have has made me a better person and I am grateful for it.”

Like all brain tumor patients, brain cancer patients, and caregivers understand, this is, and will be, my cross to bear for the foreseeable future. No matter how positive the results, we face a lifetime of MRIs and testing, with the thought of the worst-case scenario lurking in our minds. I take solace in knowing that I have an amazing medical team looking out for me and the best family and friends any patient could ask for.

Fourteen years into this, life changed – perspectives changed. Anyone who has unfortunately undergone a life changing illness can likely attest to this, and while I would never wish this diagnosis upon anyone, this has been my blessing in disguise. No matter what, I have learned the importance of staying positive and hopeful. I now know that whatever obstacle comes my way next, I’ll keep smiling and doing the only thing I know how – maintaining a good outlook, being thankful for those around me and enjoying today.

Better Days

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Well, here we are – the end of 2021 is mere hours away and if you’re anything like me, you cannot wait for 2022 and better days. At least, I think so? I am hopeful that the new year will bring the “return to normalcy”, in whatever form that may look like and much better days for all of us. I don’t know about you, but I am sick of Zoom meetings, virtual events and the terms “social distancing” and “masking.”

This past year has presented all of us with unique challenges, requiring that we be able to adapt on the fly, and my job and passion for this cause has intensified. All cancer patients, but especially brain tumor patients, including patients with a benign tumor, are in desperate need of support and hope right now, so it is somewhat surprising to me that this is the first (and only) blog of 2021, but honestly, it is for the better. As a survivor, advocate and sole employee of the organization, I need the escape from time to time.

I have the pleasure of talking with so many patients and their families, hopefully being a source of comfort and hope for them as they are going through this diagnosis. After all, that is why my family, friends and I first began hosting our fundraiser and helping – to ensure that nobody else has to go through what I or my family endured. Now through the CTBTA, we continue to support groundbreaking research at the brain tumor centers here in Connecticut, as well as provide funding to ensure patients and their families can focus on their recovery and how to get better, as opposed to how they will make their mortgage payment or afford the electric bill.

In 2022, I will be a fourteen-year survivor, yet I still remember the day I heard the news, as if it was yesterday. So much has happened over the years, much of which has been shared here, but lately, I have been doing a lot of reflecting on my drastic career change. It all happened so suddenly and without much thought in the days and months that followed, but now that I have had the time to think back on it, I am perfectly content with the decision. Despite racking up a massive student loan bill, I am still glad I chose to attend law school and to push myself to return after my diagnosis and earn the degree. It is true, “you can do anything with a law degree” and despite not being a practicing attorney, I am utilizing my degree and fancy education that cost me a pretty penny, but in a way that is more satisfying, enriching and fulfilling.

Happiness is relative, but you need to follow your heart and mind. I could have sat for the bar exam a fourth time and who knows, maybe I would have passed, but would I have been happy? I don’t have the answer for that, but I would guess my answer would be “at first, yes, but in the end, not really.”

Life is short and if this pandemic has taught us anything, it is that tomorrow is not guaranteed.

My new year resolution? To continue my pursuit of happiness and adjusting the sails, for who knows what tomorrow will bring.

“And you asked me what I want this year and I try to make this kind and clear – just a chance that maybe we’ll find better days.”

Someone Saved My Life Tonight

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Since the day of my diagnosis, I have faced my share of adversity and many ups and downs.  Along with my family and friends, one of the few constants however, has been my neurosurgeon and good friend, Dr. P.   From the fateful day I met him in 2008, he always provided a sense of assurance and confidence that I desperately needed.  Earlier this week, when the news became public that he will be retiring after a remarkable 44-year career, I was filled with sadness and joy.

Over the past twelve years, he has evolved as “my doctor” to someone I am proud to call a friend.  I put my life in his hands (literally) five times.  And fortunately, each occasion was a success and I recovered as a stronger, more confident individual.  He instilled confidence in me and is the reason I am sitting here today.  I have never shared this with him, but going through this ordeal and seeing the true hero that he is inspired me and over time, I grew so passionate about the cause.  However, thanks to law school loans that I’ll be paying back forever, medical school was out of the question, but I wanted to do my part to help others through this, so I dove head first and began volunteering for the CTBTA, followed by serving as Board President and now as their Executive Director.

I have the distinct privilege of working with an amazing group of survivors, caregivers and those who are equally as passionate about this disease as I, who all share a common goal of finding the cure and supporting the brain tumor community.  So, although I am not a doctor, I am the next best thing, in that I am using my experiences in a meaningful way and being in touch with the medical professionals who are treating brain tumors and working collaboratively to advance treatment options and find the cure.   I have had the chance to fund research projects, tour the labs and OR’s and listen to some remarkable presentations.

So, while I will miss him, I am assured that the worst is behind me and know that I have forever to go, all thanks to him.  His colleagues at Yale New Haven Hospital/Smilow Cancer Hospital have big shoes to fill and a void to fill in the hearts of many.

Dr. P., I wish you nothing but joy and happiness in this next chapter of your life.  I am eternally grateful for you and hope you realize the profound impact you made on my life.  On behalf of my family, I cannot thank you enough for saving my life and giving me the opportunity to pay it forward and now help others on this journey.

Congratulations on your well-deserved retirement!

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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 Show Must Go On

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Dear Family and Friends,

I hope that you and your family members are safe and well during this difficult time in our lives.  Navigating the year so far has been difficult, but the uncertainties and day to day changes feel oddly familiar…

It was twelve years ago today that I underwent my first brain surgery for the removal of my tumor, but yet, it still feels like yesterday.  I remember the ride from my eye doctor to the hospital.  I remember the feeling of surprise upon hearing how large the mass was and the shock and awe of the doctors and nurses examining me.  I can remember the night before surgery, laying in the hospital bed and preparing myself mentally.  In that moment, erased were the days of being young and carefree.  Instead, I had to grow up in an instant.  I had no time to process the news I had just heard or contemplate the what-ifs.  On July 2, 2008, the course of my life changed forever, but proudly, I know this was for the better and I owe that to each of you.

As I sit here today, I look at the story of my life and career to this point.  Growing up, I never really knew what I wanted to do, but I ultimately decided to pursue law because I knew I wanted to help people and do my part to effect change.  At the age of sixteen, I landed my first job with a well-known Connecticut law firm and worked there for the next sixteen years until I ultimately listened to my heart and decided to help people in a different way.

Executing the business of the CTBTA is extremely rewarding and humbling, yet it presents so many challenges, especially now as I manage a nonprofit during a global pandemic.  We have been impacted financially and emotionally, like everyone, but yet, brain tumor diagnoses have not stopped.  Patients still need surgery, perhaps followed by radiation and/or chemo.  Some of these patients have been required to put those treatments on hold due to the risk of Covid-19 in the hospitals, while some are experiencing the isolation and enhanced PTSD as a side effect of the social distancing guidelines and anxiety about catching the virus.  Support and grief groups have turned into virtual Zoom calls, both lacking that critical personal, human element.  Difficult work, to say the least.

Nevertheless, the CTBTA has been hard at work, brainstorming ideas and holding out hope that our events will offer some in-person components.  I am constantly humbled by the generosity of the community, and wish I had additional volunteer opportunities for each of you.  So many of you have been tremendously supportive since day one, and now, more than ever, we need additional help to support our programs and our quest to advance treatments and find the cure.  Thanks to you, I am here, paying it forward and so I offer to you the chance to join me once more.

Should you wish to donate and support our mission, please visit here.   While we understand the financial stress upon us all, every dollar helps and your support will make an immeasurable difference in the life of a patient and their family.

Twelve years ago, there were no guarantees or promises made – it was “just survive.”  By now, you know my quote: “Adversity.  We cannot direct the wind, but we can adjust the sails.”

Here we are, once more, needing to adjust the sails.  I am steadfast in my belief that we will, thanks to friends such as you.

Thank you for standing by me, supporting me and cheering me on over these past twelve years.  I owe it all to you.

Have a safe and happy holiday weekend.

All my best,
Chris

I’ll Be There For You

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The minutes have blended into hours, the hours into days, and the days into months.  The end of 2019 was a blur and so far, the start of 2020 has been difficult.

During these unprecedented and unsettling times, my heart goes out to everyone, from those inflicted with the virus, to brain tumor and cancer patients alike.  And while my priority remains with the care and assistance of brain tumor patients, my deepest gratitude is with the front line workers in the hospitals around the world.  Thank you for your commitment and efforts.  Because of you, we will get through this and as a community, we are Stronger Together.

These are powerful words.  Back in 2016, when the CTBTA adopted them as our tagline, the intent was to embrace the brain tumor community.  However, these two words have quickly became the motto of many within the last month as they remind us that we can all do more to be more compassionate, more generous and more selfless.

We need to be strong for our family, friends, neighbors and strangers.  We need to be strong and supportive of the doctors working hard to keep us healthy.  And I will remain strong and continue to be a friend and supporter for anyone who needs it, but my commitment remains to the brain tumor community.

As our communities continue to adjust to the evolving conditions, one of unfortunate constants will be the diagnosis of a brain tumor. There will continue to be diagnoses of brain tumors and the consequential impact on a family’s financial situation will mount.  Fortunately for you, the CTBTA will continue to ensure that no one has to face this disease alone.  Our focus will remain on improving the quality of life for patients, survivors and their families and on accelerating the discovery of new treatments and cures.  With every new obstacle we are faced with as a result of this growing pandemic, we will adapt and respond accordingly.  Over the past several weeks, I have spoken to doctors and nurses, and have heard from families following their treatment, and am so grateful to be assured that wonderful care is continuing to be provided to everyone in need.

The month of May is “Brain Tumor Awareness Month” and all of us at the CTBTA were looking forward to kicking things off with the Path of Hope on May 2nd, as well as several third-party events geared towards raising awareness of brain tumors.  Given the current situation, with a heavy heart, we have decided to postpone our 5K until the fall.  In the meantime, we look forward to sharing details of a new campaign that everyone can participate in safely and comfortably, so be on the lookout for our announcement soon.  And although our Gray Ribbon Club and Good Grief Group meetings need to be placed on hold indefinitely, we will continue to provide hope and support in every means available.

I remain eternally grateful for your continued support and assistance and look forward to seeing everyone again soon.  Stay safe and well, and please know that the CTBTA and I are here if you need us.

Together, we will weather this storm.

 

Adversity. We cannot direct the wind, but we can adjust the sails.

Blessing in Disguise

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“It’s the scars that make you stronger,
It’s the hard times that make you wise,
It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

You know the story, but eleven years ago, I was fearful and afraid, unsure if I would wake up from surgery, or what my life would be like afterwards.  Yet, things have worked out very well and after another amazing night at our sixth annual Playing for the Cure: Brainstormin’ event on Friday night, I can one-hundred percent say my diagnosis was a blessing in disguise.

As I stood at the podium and looked out to the crowd, all 300+ of you, I was overwhelmed, humbled and proud.  This was our largest crowd ever and I am so glad to see this event continue to grow and help others.  It wasn’t until after I was diagnosed that I heard and met so many people and families affected by a brain tumor and for you to come and be a part of this special event was fantastic to see.  I got to meet many of you and hope you know that you are now part of a special community with individuals who truly understand and get it, so I welcome you into the CTBTA family.  We’re gaining momentum and with special thanks to all of the media outlets that supported this event, especially the Hartford Courant, WTIC-1080, WTNH and WFSB, we will continue to expand our footprint and reach and raise awareness.

On behalf of the CTBTA, I had the distinct pleasure to honor and remember the life of June Rice by awarding three inspiring brain tumor survivors with a “June Rice Courage Award.”

Darcy, Steve and Cesar – I hope you are as proud of yourselves as the CTBTA and I are of you.  You have demonstrated such strength, resiliency and bravery and are an inspiration to everyone.    Thank you for allowing us to share your story and spread hope.  Continue fighting, and know we are always here to support you.

Kim, Melissa and your entire family – what a pleasure it was for us to honor June.  You made your mom so proud with your heartwarming speech, there was not a dry eye in the room.  Though her and I never met, I am grateful that we have connected and hope our friendship will last eternally.  As you vowed to me, you and your family have my absolute support and friendship today, tomorrow and always and we, the CTBTA, are here to support you all.

To all of our sponsors, especially the Yale Brain Tumor Center at Smilow Cancer Hospital , thank you for your tremendous show of support.  I am, and will always be, eternally grateful to you for returning me to good health and helping me find my voice in the quest to work alongside brain tumor centers in the state to help others and ensure that no family goes through what we endured in 2008.   A giant thank you to our Platinum Sponsors, Carla’s Pasta and Specialty Packaging; our Gold Sponsors, iHeart Media and Harte Auto Group; Silver Sponsors included Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Women on Wealth, BMO Harris Bank, People’s United Bank, Al Mac Motors, Harvard Pilgrim Health Care, Edge Technology Services; thank you to our Bronze Sponsors including Russo, Russo & Slania, Guida’s Dairy, UKS, Blum Shapiro and Unitas Club; and Friends of Brainstormin’ Stop & Shop and Webster Bank.  Events like this succeed because of you, and we hope that you will continue to support us until our mission has been fulfilled.

Friends, old and new, from the bottom of my heart, I thank you.  Erienne and all of the members of Blanket Statement, thank you for joining us and being a part of this memorable occasion, you were amazing.  We also want to thank Carla’s Pasta and Shoreline Cafe and Catering for donating all of the food, and to Beach Donuts for supporting us.  Last but not least, to our partner and friend, Ed Crowley and the staff at Stony Creek Brewery, I appreciate all of your support, enthusiasm and compassion for our cause.  I look forward to sharing the amount we raised with you soon, and planning for 2020 very soon, but until then, let us rejoice and celebrate this achievement.

“It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

Hallelujah, Hallelujah

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CTBTA_LOGO_Standard-RGBPlaying for the Cure: Brainstormin’ is 30 days away!  Along with my family and the Connecticut Brain Tumor Alliance, I am really looking forward to another great year and building on the success we’ve had since 2014.

We’ll be back at Stony Creek Brewery in Branford for this annual event that celebrates brain tumor warriors, caregivers, doctors, nurses, family and friends as we gather together in our quest to find the cure and improve treatment methods.  I cannot say enough about the staff at the brewery, including Ed Crowley, Ali and Norm – you three make this a great event, and I am humbled by you bringing additional awareness to the cause during the month of September for your Charity Wednesdays!

Thanks to our presenting sponsor, Smilow Cancer Hospital/Yale New Haven Health, we are well on our way toward surpassing our goal of raising $50,000!  In addition, thank you to Carla’s Pasta, Specialty Packaging, Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Edge Technology Services, People’s United Bank, Al Mac Motors, BMO Harris Bank, Harvard Pilgrim Health Care, Russo, Russo & Slania, UKS, Blum Shapiro, Unitas Club, Guida’s Dairy, Stop & Shop and Webster Bank!  We could not do this without you and your loyalty over the years.  A big shout out to iHeart Media for your support and partnership with us, and to Renee DiNino, our emcee for the fifth straight year – we appreciate the enthusiasm and passion you exude. 

What began as a “concert” has morphed into a fun night out, all for a great cause.  We’ll have live music by Blanket Statement; pasta prepared by our friends at Carla’s; sandwiches and wraps donated by Shoreline Cafe and Catering; the best donuts from Beach Donuts; an amazing raffle and live auction which will include two tickets next to the dugout for the Red Sox/O’s game on September 28th, thanks to Mary Beth Rossi; as well as a separate raffle for the street scooter donated by Al Mac Motors.  Better yet, we are offering anyone that buys a ticket and raises $250 in donations or through a sponsorship a three-hour open bar (just be sure to bring a designated drive or Uber for the night, please!).

However, saving the best for last is the announcement of our decision to honor and celebrate the life of June Rice who passed last December after a courageous and hard-fought battle with brain cancer.  Though I was never fortunate enough to meet June, I am blessed to have formed a friendship with her son-in-law Ed Crowley, the owner of Stony Creek Brewery, and his wife Kim.  Late last summer, when Ed shared June’s diagnosis with me, my heart broke.  Always in my thoughts and prayers, I messaged him from time-to-time and I sensed hope and comfort when he sent me a photo of our poster promoting last year’s event in her room at Smilow.  The week following her passing, Ashley and I went to see Nick Fradiani play a holiday show at Infinity Hall in Hartford.  Seated two rows in front of us were Ed, Kim and their entire family.  Unbeknownst to me at that moment was the connection between Nick and the Crowley family, but suddenly, in the middle of the show,  Nick spoke about June and his friendship with Kim and her family.  His words were strong and poignant as he paid tribute to her by singing a beautiful rendition of Hallelujah, one of the songs he performed at her services.  Along with everyone else in the theater that night, I was moved and felt the hairs on my neck stand straight up.  This memorable and beautiful moment was the impetus that brought the aforementioned idea to life.

A couple months later, I met with Kim and Ed to discuss some ideas I had for the event.  As we began talking, it did not take long for me to realize what an impact June made on her family.  I wanted to do something special and kicked around some ideas internally and eventually, I landed on the creation of the June Rice Courage Award.  This award will be presented to three patients treated by June’s surgeon, all who embody her spirit and fight, and which I hope will serve as a permanent fixture of her legacy.

Through efforts such as this fundraiser and the awareness that results, I am confident that we will move the needle, even if just a little at a time.  IMG_0289 copy Doctors and researchers are hard at work, looking to learn as much as they can about brain tumors and their genetic makeup to create targeted and precise treatments.  The day will come, I am sure of it; but until it does, the CTBTA will continue to provide hope and support, as well as funding for these important milestones.

If you have not done so yet, check out the link above to purchase your tickets and make a donation.  I hope to see you there!

Event Details

Date:  September 20, 2019
Doors Open:  6:30pm
Ticket Price:  General Admission – $40.00 through 9/19.  $50.00 day-of, if tickets remain.  Free for Brain Tumor Warriors
Live Music:  Blanket Statement

For tickets, donations and sponsorships, visit: https://ctbta.rallybound.org/brainstormin

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…

Brain tumor education, support, and inspiration.