Tag Archives: adversity

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.

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.

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…

Don’t Stop Believin’

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Where has the time gone?   Admittedly, and my apologies to all of you, but since starting my new position, my blogging has gotten away from me as I have needed to give more of myself to the position and to get my feet under me.  However, with this work, my commitment, passion and dedication to the cause has only grown.

Santa responded favorably to my list, but the end of 2018 was still difficult.  As the Board and I continued to process the loss of Tracey, the strongest brain tumor warrior I have ever met, I kept asking “why?” but remained committed to the fulfilling our mission.

During our first Board meeting in 2019, a common thread formed – though we were collectively hurting, our commitment and dedication was unwavering.  The CT Brain Tumor Alliance will continue to assist patients and families, serving as a resource to bring awareness, hope and partners together to find the cure and help everyone facing this diagnosis.  The passing of Tracey has been very difficult, but I am so proud of her family, friends and our Board, all of whom are resolved to continue her legacy and push the needle further in helping to make Connecticut a center of excellence in brain tumor care.  I previously mentioned the picture in my office of her and I, and upon arriving every day, I look at it for my inspiration and hope that I can make half the impact that she did.  So, to that end, Connecticut, get ready.  The CTBTA is coming for you and we are moving full speed ahead with two great events on May 4th to kick off Brain Tumor Awareness Month.

In the morning at beautiful Elizabeth Park, which Tracey loved and adored, join us for our annual 5k, the Path of Hope.  If you’ve been to a previous Path of Hope, you have witnessed the beauty of seeing brain tumor patients, their caregivers, families and friends come together for a day of celebration, remembrance, passion and hope.  Building off our recent success last September, we are proud to bring our flagship event to May and begin this great month with a bang.  For further information and to register, please visit: https://www.ctbta.org/events/path-hope/event-info/

Also on May 4th, the CTBTA is proud to host “A Night in Paris.”  This special, one-time event is a dedication to the life and memory of Tracey.  An admirer of all things French, this memorable event will be filled with exquisite French cuisine, an exciting raffle and auction, all cast under the Eiffel Tower and French street signs in the place she loved the most.  Please join us to continue Tracey’s legacy of helping others and giving back.  Along with the members of this fantastic Committee and the CTBTA, I hope to see you there and encourage you to please attend if you can, or purchase a ticket for the benefit of a survivor whom Tracey treasured dearly: https://www.ctbta.org/events/night-paris/

There are just under three weeks from the big day and the excitement and pressure is mounting.  Sure, two events in one day may seem insurmountable to some, but I am determined to make it an exceptional day.  Thanks to our many sponsors who are supporting these events, all of the participants currently registered, and our dedicated group of volunteers, it is our commitment to bring hope to all who are fighting and allow the hospitals we partner with to continue their advancements.  May 4th, 2019 will be remembered as a day of mutual celebration where we all rejoiced and said “we did it!”  Here’s to you Tracey.

So Here’s My Lifelong Wish, My Grown Up Christmas List

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Dear Santa,

As children we believe
The grandest sight to see
Was something lovely wrapped beneath the tree
But Heaven only knows
That packages and bows
Can never heal a heartached human soul
No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone…

It’s been a while since I wrote you and I’m taking a leap of faith as I  write to you again this year, but what do I want for Christmas???

Well, since you asked, here it is.  It’s a bit unusual, but it’s my grown up Christmas list.

This past year, I was named the Executive Director of the CTBTA and the position has been extremely rewarding and fulfilling.  I truly believe that in the not-too-distant future, our state will be a ‘center for excellence’ in brain tumor care and treatment, but there is much work to be done and maybe you can help!  So, here goes nothing…

First, please help the hard work of our organization so that we may continue to enable the doctors and researchers to advance treatment methods.  Brain surgery is certainly not fun and takes months, if not years, to fully recover, so we want to see the day that surgery can be less invasive and to continually improve the standard of care for brain tumor patients.

Next, we need more clues and positive results to understand the drivers and causes of a brain tumor.  Help us to understand the underlying cause of a brain tumor so that the doctors and surgeons could take proactive measures to treat this disease.  Completion of this will help bring us my third wish, the cure!

Fourth, please bring those who are suffering comfort and support.  Whether they are recently diagnosed; a brain tumor warrior; a caregiver; or a parent, friend or family member of someone who is battling this diagnosis or coping with the insurmountable loss, everyone needs additional help and hope.  We pride ourselves on doing the best we can do provide hope and support, but our reach only goes so far and additional resources are needed.

Finally, the brain tumor community could use more joy and laughter.  This is a difficult diagnosis to cope with, but hope, laughter and joy are the best medicine.

I know this is a lot, and you might not be able to help with everything this year, but it would mean the world to all of us in the brain tumor community if you could help in any way possible.  I’d appreciate it!

Thanks,
Chris

p.s. I’ll leave cookies and milk!
p.p.s. Don’t forget gifts for Ashley and Coddington!

A Hero Lies In You!

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“You have a brain tumor.”  These were the words uttered to me that have changed my life ten years ago.  When I first heard them, I knew what it meant, but I never could have prepared myself for what my life has now become.  It is the reason my family and I began this fund and why I took on a bigger role with the CT Brain Tumor Alliance.  This weekend is the midway point – Brainstormin‘ last weekend and the Path of Hope next.

As I sit here and write this, thinking back on the night last Friday, the best way I can personally describe the night was joyous.  In my humble opinion, I think the author of this email described it perfectly: “Last night was supremely fabulous!  I found myself feeling overwhelmed with such palpable love that I am sure you felt as well.  I certainly hope so because there really aren’t adequate words to describe it.  The people around me repeatedly shared the same sentiment, so I don’t think it was just me and you.”

Photos by Abigail Scott Photography 

As I stood at the front of the room, looking out to a room full of family, friends, doctors and nurses and fellow brain tumor warriors was extremely overwhelming.  Yet, because of you, this is possible!  To our presenting sponsors, Carla’s Pasta and Specialty Packaging – words are inadequate to truly let you know how I feel.  Each year, you go above and beyond what you commit to and your help in growing this fundraiser is beyond appreciated.   You made the night possible and instilled hope for continued findings.   The Carla’s Pasta food truck – great addition this year and amazing!  Thank you Heat for providing great entertainment all night long!  Thank you Renee DiNino for your eagerness to serve as emcee, you were great as always!  And to Ann Nyberg, it is always great to see you; your time and desire to be a part of this night is so greatly appreciated!  To the rest of our sponsors: ShelfSpace Marketing, Strategic Information Group, Beirne Wealth Consulting, Connecticut Public Broadcasting, Edge Technology Services, People’s United Bank, Stop & Shop, BMO Harris Bank, Sullivan & LeShane, Unitas Club, Blum Shapiro, Guida’s Milk & Ice Cream, Karmory, Webster Bank, Russo, Russo & Slania, Updike, Kelly & Spellacy, Thrive Therapy Services, Al Mac Motors, iHeart Media and WTNH – THANK YOU ALL!  To our vendors, Shoreline Cafe & Catering, Beach Donuts and Libby’s Italian Pasty Shop, thank you all.  And last but not least, to our host, Stony Creek Brewery, thank you for making the night  special and building this partnership with us.  I look forward to continuing to build upon what we have started and moving forward with our beer, which everyone loved!

So while donations continue to be made and Stony Creek Brewery has one last Charity Wednesday on September 26th, we won’t know the exact dollar figure raised for Yale quite yet, but I can assure you that you should feel proud.

The pinnacle moment of the night was when I got to share that the team at Yale is moving forward with its research project on central neurocytoma.  In a previous blog, I told you that the doctors and researchers have collected a cohort of samples and are ready for the second phase of the study, to further understand the molecular processes driving the formation of these tumors.  With the support you have provided, Yale is completing an application for funding from the National Institutes of Health on central neurocytoma in early October.  We are that much closer and it is a joint effort, one for which I am forever grateful.

So to everyone who donated and joined us, thank you again, you’re all heroes!  I look forward to sharing the grand total and additional updates with you soon.

Now, I’ll get back to final preparations for the CTBTA’s 5K next Saturday’s.  For information, visit https://www.ctbta.org/events/path-hope/event-info/.