A letter from the Founder
The Willie Fund.
I created The Willie Fund while my Dad was still alive... in fact, the entire concept started while I still had a smidgen of hope that he'd maybe stick around for a while…
Perhaps he'd be there on my upcoming wedding day, and then make it to my sister’s wedding after that… maybe he’d be around to meet my youngest sister's future husband or my future children… please let him be here to grow old with my Mom, or at least older than 63… I wanted so badly for all of these things and struggled tremendously to accept that I was completely out of control of them ever happening. I wanted to help fight for my Dad... and because, unfortunately, I lack the brains of a surgeon or oncologist; I started playing around with the idea of a charity. If I couldn’t be the doctors, I sure as hell could help support them.
The idea of The Willie Fund pretty much started right after I got the call from my youngest sister telling me that the immunotherapy wasn't working… while this was something we knew would be a hit or miss, it was also kind of the basket we put all our eggs in… This call came while my fiancé and I were packing up our house in Fort Lauderdale and preparing for our 1,500 mile trek North for our first summer on Cape Cod in our new Cape house right down the street from my Mom and Dad. The house that my Dad toured with us just 3 months prior, for a summer we had planned would go very different.
9 months ago my Dad was fine.
The rapid pace of my father’s diagnosis to my father's death is painful beyond anything I can express. However, I am utterly aware how lucky I am that I got those final months with him… as a neighbor to boot.
One night in early August; me, my Mom and my sisters Chloe and Carly sat around him and got to tell him about "The Willie Fund”. We told him that we wanted to create a non-profit in his name to go directly to the fight against head and neck cancer. We told him how I spoke to Mass Eye and Ear as well as the doctors who treated him and that they have already hit the ground running to help us. Dad cried, telling us how honored and loved he felt. We felt honored that we were able to have him around to hear about it.
The Willie Fund is for my Dad… and all the dads, moms, daughters, sons, husbands, wives, sisters, brothers and friends that are going through the same thing. Willie is fighting for you.
My Dad was diagnosed with Head and Neck Squamous Cell Carcinoma (HNSCC) in September 2019, 10 years after he won his year-long battle with throat cancer. The first prognosis of HNSCC was on his tongue and was successfully removed by Massachusetts Eye and Ear's surgical team in October 2019; most notably by Doctor Deschler, the same doctor who successfully performed Dad’s throat surgery 10 years before and whom my Dad trusted immensely (and rightfully so, as he had saved my Dad’s life twice)… he’s also the same doctor who I spoke with regarding The Willie Fund.
Unfortunately a year and two months after his tongue surgery, in December 2020, they found another tumor. It was on his lower left neck. It was inoperable. It was incurable.
The Mass Eye & Ear team dove in head first, scheduling him for a couple rounds of radiation to hopefully shrink the tumor slightly and would then start immunotherapy a few weeks after. We were excited and hopeful. We’ve heard many success stories about immunotherapy and loved that the side effects were far less than chemotherapy. We were ready to "beat" this again.
The months that followed were painful for my Dad, and mostly spent in bed. He had a feeding tube in his stomach, and a large open wound on his neck caused from the pressure of the tumor. He seemed to be getting worse, not better… and by May 2021 we learned that his body was not reacting to the immunotherapy. This was when I got the phone call. This was when The Willie Fund started churning.
It seemed the months that followed was just bad news after bad news… yet, my Dad kept fighting and so did his doctors. They started him on chemotherapy with the goal to shrink the tumor, or at least keep it at bay, the objective was to get him “healthy” enough to be a potential candidate for a clinical trial... I had lost my father-in-law, Doug, to an over-decade-long battle with cancer just a handful of months prior, and one thing that my mother-in-law had said to me while going through this, so suddenly and so quickly after losing Doug, that had stuck was “if they’re still trying, there is still hope”. And oh how they tried… and I hoped.
In late June I took my Dad up for a PET scan to see how the tumor was reacting to the chemotherapy... or if we hit another dead end. This was the day we got good news. The tumor had shrunk substantially. The chemotherapy was working. This was also the last day we got good news.
The following two months were two of the most traumatic months I’ve ever had to go through but also taught me how resilient and brave my father was and how much of that he passed down to me.
In mid-July my father suffered a hemorrhage at the location of his open wound, something we learned is common for HSNCC patients. It was a Monday. I was walking back into my parents’ room to join my Dad for our nightly episode of Jeopardy, something we did every weekday night. Before I got to sit down, my Dad coughed and suddenly blood came pouring out of his wound. For 10 minutes, that felt like hours, it was just me, my Mom and my Dad… my Mom and I fought to keep my dad alive while my Dad was cool as a cucumber. My Dad lost 2 liters of blood that night and went into shock in front of us. After the paramedics came and took him away by ambulance, my mom and I just sat on the front porch in shock, covered in my father’s blood and our tears. When we got to the hospital we were told he was stable.
Mass General told us that the bleed was caused by a large vessel wrapped around the tumor and they had to perform surgery to cauterize it and lessen the likelihood of it happening again. However, the procedure put him at a high risk of stroke since it involved his carotid artery. In addition we had to make a difficult decision; do we continue with chemotherapy?
In shock that we went from the good news at his PET scan in June- to now, was devastating. The emotional rollercoaster of hope and despair in the span of 3 months was exhausting. I was sad for myself, sad for my family but more than anyone, I was sad for my Dad.
After several family discussions we collectively decided to move forward with the surgery as well as chemotherapy. We still wanted to get him to the point where he would qualify for a clinical trial and Dad would do anything to fight to be around for his girls.
The surgery was a success and Dad was sent home. I was hopeful again and driven to continue and help my Dad fight so we’d never have to go through the feeling we did on that Monday night again.
Unfortunately this would only last for 3 short days.
Day 1. Dad was on cloud 9 to be home, we all were. He was put on a new pain management plan that palliative care put together for him before he was sent home from the hospital and was feeling good. We moved his bed into the living room, so he was no longer isolated from the daily activity of his loved ones. He was goofy as ever, but we chalked it up to the excitement of being in his own bed and the new pain medicine.
Day 2. Goofy became loopy. His awareness of where he was started to fade and he would often refer to things that weren’t actually there or happening. That night I decided to sleep in the living room with my Dad.
Day 3. I woke up to Dad having full conversations with people who weren’t there. He was moving his arms around as if he were picking up and moving things that weren’t in front of him, completely unaware of his wound or the pain these movements caused him. For a brief moment, I felt relief. These conversations were fully understandable… it was as if I was eavesdropping in. I laid there on the couch listening to him out to dinner with my Mom, having a conversation about work with a colleague, laughing with a buddy... he was laughing. He was being Dad. Unfortunately this blissful thinking didn’t last and we soon realized there was something terribly wrong.
That morning we brought Dad to the emergency room. This would be the last time Dad went to the hospital.
Dad had sepsis.
Chemotherapy was no longer an option.
We were now making arrangements with hospice.
His time was limited. My heart was broken.
Dad came home under hospice care with no more than a couple weeks left. It was the first time that I had to let go of those hopeful thoughts. My mom and sisters handled this better than I did.
The first week Dad was, Dad. Because he was under hospice the pain meds were slightly higher so his pain was down and he was able to just enjoy his time with his girls; which is all he really ever wanted. We spent every moment we could with him. We even got a book called “3,001 questions” and took turns asking and writing down his answers.
After about a week and a half, he was sleeping more than he was awake. He started getting confused about his whereabouts and was seeing things that weren’t there. We would play Frank Sinatra and all sit around his bed holding his hand and just soaking in the moments with him.
Within a week before my Dad died, he had a conversation with my Mom telling her that he was ready. he said that he wanted to have one final goodbye to his 4 girls before he no longer was aware of his surroundings. that morning my dad sat with my mom, chloe, carly and i and told us that he was at peace, that he was ready to go, and that we could sure as hell bet that he’d be visiting us from time to time.
The hospice nurses have all been telling us about the “ stages of death” and the little things that they consistently see in their patients- patients of all different ages, with all different beliefs, dying from all different causes. They were stories with little grasps of hope that whatever happened after death, it's not going to be alone.
A few nights before Dad died, my mom, sisters and I experienced “comfort” for the first time as we watched Dad have conversations with people who were "no longer with us”. Let me tell you, this was 100000% different than when I watched him hallucinate from the couch… this was not an infection talking, this was Dad. He was talking to his Mom and Dad, to my Mom’s Dad, to a family friend. “Holy smokes. It’s beautiful. I’ll be up there soon."
August 26th 2021
My Dad died from Head & Neck Squamous Cell Carcinoma. My urge to continue to fight against Head and Neck Cancer is further fueled by that sentence.
My Dad was the most loving, most caring, most generous, family-oriented, hard-working, party-harding, fun-loving guy. He wore his heart on his sleeve. He was the life of the party. He was my favorite person and I am fiercely aware of how lucky I am to be his “daughter #1”.
He enjoyed life more than anyone I’ve ever known and had a knack for always making sure those around him did too. His happiness was authentically contagious. Even in his final days, Dad had us laughing. He was always there to proudly share his life stories with a big grin on his face, provide late night words of wisdom with a manhattan in hand or to swing, flip, twist and toss me around the dance floor at every wedding.. something I will miss beyond words at my own wedding.
He was an eternally devoted husband who loved my mom with his entire being. He was unwaveringly loyal, which can be seen in his relationships with his siblings that were his best friends and his best friends that were like siblings. He was a sensitive hard-ass who flawlessly executed the role of #GirlDad and never failed to let us know how much he loved us up until the last day of his nearly 31 year career as “Dad”.
Dad was a fighter. He pushed through every up and down that the past two years threw at him, and while I can’t say it didn’t come without some classic willie-boy whinin’, Dad made sure it was always accompanied with lots of humor…and lots of foot rubs. Dad never stopped being Dad, which I admire him and thank him for.
During my final few weeks with him, I asked what his greatest accomplishment in life was. He answered; my three girls. Well, Daddio, my greatest accomplishment is being your daughter.
While he left us far sooner than we could have ever been ready for, Dad was proud of the life he made… it sure was a hell of a good one.
I will miss you every single day and can’t wait to see you again.
Until then, I love YOU tons & tons.
Love your daughter, Casey