Tag Archives: adversity

Hallelujah, Hallelujah

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

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’

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

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!

“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/.

We’re All In This Together

Ahhh, September is finally here!  And that means Brainstormin‘ is literally just around the corner.  My family, friends and I are hard at work, getting last minute details squared away and ensuring that Friday night will be one to remember.  To those who have their tickets, I look forward to seeing you there.  For everyone else, you can purchase them at the door!

I’ve been posting a lot on social media and sending emails blasts with the various updates, but here’s everything you need to know:

Friday, September 14th at 6:30 at Stony Creek Brewery.  We have sponsors; we have iHeart Radio’s Renee DiNino as emcee and Ann Nyberg of WTNH as our special honorary guest; we have the cover band Heat; the Carla’s Pasta truck will be on site; we will have a commemorative toast with beer brewed by Stephen and I; raffle and auction items that you won’t want to miss; but most importantly, updates on the central neurocytoma study that your funds have supported by surgeons at the Yale Brain Tumor Center.

In the five years that we have done this, there has been one constant and that is the support of our family, friends, coworkers, survivors, warriors and caregivers alike, as well as new faces from around the community.  Without your never-ending generosity, this would not be possible.

Because of you, I have hope.  Because of you, brain tumor patients and their families have hope.  Because of you, better treatments are being found and we are inching closer to the cure.

As a ten-year survivor, there is nothing more that I could have asked for when I was diagnosed.  At the outset, I was afraid, albeit confident.  I fought hard to regain all that I lost.  When I finally returned to my old self and came through this adversity, I knew I wanted to make things better for the doctors and patients fighting this disease.  Because of you, I found it within myself to want to champion this cause and give back.

On Friday night, come out and be prepared to have fun.  Open your hearts and your wallets and help to find the cure.  Yankees and Red Sox fans, there’s something for you; if you’re a fan of the Giants, come on out; Elton John fans! food lovers!  You get the hint – we have awesome prizes.  And someone will ride home on this, thanks to my brother-in-law and owner of Al Mac Motors who has donated a scooter every year this fundraiser has been held.

A brain tumor diagnosis is not something that anyone wants to hear.  It is not a ‘sexy’ disease and is underfunded in terms of research dollars.  But you will be helping to change that that, and I am eternally grateful.  The seeds were planted five years ago:

You Get What You Give

Are my eyes deceiving me, or are we really midway through August?  This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.

While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding.  As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today.  I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.

The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease.  We are not doctors and we are not psychologists.  But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience.  Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop.  During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that.  I am overjoyed by the progress of our participants.  Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise.  Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there.  As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life.  To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.

In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month.  As young, thriving adults, their world was turned upside down when they received the diagnosis.  By a stroke of luck, we first met at a conference in June and exchanged contact information.  Later that month, I was hired in this capacity and we’ve been in constant contact since.  On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment.  This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.”  You think you had a rough day?  Talk about resilience.

When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be.  Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc.  Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.

For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care.   I really couldn’t ask for anything more.