In lieu of flowers
Who else knew Johnny?
In lieu of flowers
Personal note from Jessica Breault Ramirez
The activity, love and generosity on Johnny's memorial website warms my heart. THANK YOU from the bottom of my heart for EVERYTHING! For anyone that was not able to attend his Funeral Mass in person or watch the live recording - below is the eulogy I wrote. Johnny was a miracle and the bravest man I know. His story is powerful and needs to be shared and honored.
As I look around this church I feel an overwhelming feeling of love. Love not only for Johnny but for myself and our children. Thank you for taking time out of your busy schedules to celebrate Johnny. He was a husband, father, son, brother, uncle, cousin, godfather and friend to so many of you. I see family, friends, colleagues, neighbors and so many faces from our local and our Resurrection community – some of you have traveled a long distance to be here and I can’t thank you enough. For anyone who may not know me, I’m Jessica – Johnny’s wife.
Johnny grew up not far from here in Port Chester, NY and was one of 7 siblings with 3 brothers and 3 sisters. I loved hearing some of his childhood stories – camping trips with his family, his mom always encouraging the kids to play outside to get exercise and fresh air, so they would take bike rides to/from Playland (a local amusement park here in Rye, NY), shooting his neighbor and good friend Humberto from his window with a BB gun while he was talking to his brother across the street (the details of the story always make me laugh), going into NYC late at night to go dancing and clubbing with friends, the hot lunches his mother would bring him to school every single day, or how proud he was to have parents that enforced they all be together and sit for dinner every night (a tradition that my family also instilled and we have done with our children as well).
Johnny and I met 17 years ago at the gym in 2004. I always tell my friends if you want to meet a great guy – head to the gym and/or church. I was a personal trainer and he was a member of the gym. We met through my interest, and his love of racquetball, which was one of his greatest passions. Later on I learned he had asked for the introduction because he wanted to get to know me – he had his sister, Jessi come to the gym to “check me out” when I wasn’t aware. He surprised me that night at the bar, while I bartended at my second job. He stayed talking to me all night, waited for me to get safely to my car and said to me “I just want you to know that I am going to marry you one day” – just like that, matter of fact with a big smile on his face. Man – he had the best and most sincere smile with those awesome dimples. He was dark and handsome, just my style (not so tall but I could look past that) but I thought “wow – this guy is super cocky” – which is not my style. so I responded “yeah, I’m dating someone”. He said “that’s fine, it won’t last long and I’m patient”. As cocky as he was, I kind of liked the certainty behind his words.
Little did I know how right he was! He pursued me with the best of intentions. He spoiled me, wined and dined me and won my heart over with his smile, contagious laugh, charisma, thoughtfulness, athletic talent and his stunning good looks. He was persistent and never gave up. He took me snowboarding one night and bought boards, boots and gear for both of us, as a surprise and we hit the slopes. He is the only man I know who learned how to snowboard in less than an hour! Johnny and I loved living on the edge - our honeymoon was filled with adrenaline packed activities - bungee jumping, skydiving, cliff jumping, you name it- we did it. My favorite birthday of all time was when he surprised me with a new bike, tons of paint, brushes and canvases- took me to central park in NYC and we rode around, painted all day in the sun knowing that art was one of my greatest passions. It will always be my favorite day with him. Some of my other favorite memories were spent with Johnny in Martha’s Vineyard the first summer we met. He had just started his own business - which was one of the many things I loved about Johnny. He sacrificed so much to surprise me and spend almost every weekend with me (which he often made 3 day weekends). Johnny is one of the most talented finish carpenters I have ever met and takes such pride in the work he creates not only in our home but on his client’s boats. He is extremely hardworking and a perfectionist.
We married on August, 26th 2011and I felt like the luckiest girl in the world that I got such a great catch. The day after our wedding, Hurricane Irene hit and even though we had no power for 8 days, those first few days of marriage were so special. We had no distractions, free from devices or work and we spent all our days talking, telling stories, laughing, playing games and intimately getting to know each other.
Unfortunately, that bliss and care free life started to change about 8 months into our marriage. Johnny started to complain of a weird feeling he was experiencing on the right side of his body. Because he was such an avid racquetball player, I told him it was probably just a pinched nerve and to get it checked out. It took a few months before he finally went for an MRI of his neck and brain to be sure nothing was going on (literally thinking nothing of it). He called me at work after his MRI and said the neurologist ran after him in the hallway and told him he has a large mass in his brain and he needs to see a specialist ASAP. He called me at work to relay the message and said “it’s probably nothing, don’t worry about coming I know you have to work”. I responded by saying “are you kidding me, no we will be there together”. After waiting for the doctor for almost 5 hours because he got stuck in an emergency brain surgery, he pulled us into his room – flipped his computer screen around and showed us an MRI with a tumor that took up nearly half the left side of his brain and said “We need to figure out how much time we have”. I remember almost falling off my seat, my body going numb and thinking “what? How much time we have? He is too young, we haven’t even been married a year”.
We walked to the car holding hands, fingers interlocked in silence with tears streaming down our faces. Once we got to the car we hugged each other for what felt like an eternity, then I looked at him and said “You are going to beat this, who the heck is that doctor to put a timeline on your life- we clearly will never see him again AND we are going to figure this out”. The next several months I was a research maniac, literally dedicating every free and waking moment to learning everything and anything I could on brain cancer. We must have gone to about 15 different neuro-surgeons to make sure they all said the same thing and that we found the best of the best doctors. The night before his first brain surgery we talked A LOT. We both agreed that extending his life expectancy without sacrificing his quality of life was the utmost importance to us. It was at the forefront of every medical decision we made.
Johnny’s first brain surgery was August 15th 2012 and we celebrated him coming home the day before our 1 year wedding anniversary. Immediately after that Johnny said he wanted to have kids right away. At first I said “well don’t you want to enjoy our marriage first and travel a little before we have kids?” His response was “yes we will do all those things but I don’t know how much time I have and we always talked about having a family and I really want kids with you”. So naturally… we got a dog first. We needed to be sure we were fit to be parents and we were still navigating this new medical field and what next steps were for treatment. Zealand aka ZZ has been a major part of our lives and so intuitive – he even got Johnny out of seizure one time by constantly licking his hand until the seizure stopped. I will never forget that moment – just like so many others.
The next 9 years brought us so much joy but a lot of challenges too. The first thing we did was go away to the Berkshires in MA and study a diet called Macrobiotics at a weeklong “camp” learning why we should and should not eat certain foods. Gone were the days of pizza and big ice cream sundaes (which were his daily favorites), we ransacked our fridge and all our cabinets the day we got home and tossed anything that could be harmful to Johnny’s success. There was little that we could control, but how Johnny fueled his body was one of them. From that day forward the way we ate and drank was at the core of our new lifestyle change. The remaining years Johnny had an MRI every 3 or 4 months causing us days of anxiety as his type of tumor was extremely unpredictable and could grow rapidly without warning.
In 2014, one of his MRI’s appeared to show slight growth so we changed our diet to ketogenic and Johnny started a chemotherapy pill called Temador. 3 months later Johnny started having significant changes in his personality, he was unable to talk, his memory was fading, his right hand shook so bad that I had to feed him, he was starting to drool and kept falling over and losing his balance. Our existing doctors responded with “yeah, this is what happens”. We refused to accept that as an answer and we went to multiple other doctors until one doctor started him on a steroid and rushed an MRI which showed massive growth. I was 9 months pregnant with our first child and I remember Johnny’s neurosurgeon saying “I think we need to get him into surgery tomorrow morning…. Or you wait till after the birth but the rapid growth could cause permanent damage and you have no idea when this baby will come.” Time was of the essence and Johnny’s health was most important so he went in for his second brain surgery the following morning. The night after his surgery I started having contractions at the hospital and Johnny was thankfully released the following evening to watch the live birth of our first born son, Mason.
That joy and happiness was short lived as 2 weeks after Mason was born, Mason needed to have emergency stomach surgery and 2 weeks after that, Johnny unfortunately had massive growth again and he went in for his third craniotomy. I had to spend half the day with my newborn and half the day with my husband. That was one of the most challenging times of my life as I tried to soak up all the love of newborn bliss while also fearing the worst as Johnny tried to recover from another painful surgery. A month after surgery Johnny started radiation therapy every day for 3 months. My entire maternity leave was focused on Johnny and his health and making sure he had as much time with his new baby as he could get. We went back to our macrobiotic diet, stopped chemotherapy and continued focusing on alternative medicine. We made a pact that we were going to live in the moment and be present – “Live as if you only have today”. We were determined that he would beat the cancer (worse case it would just become stagnant and not grow from all the therapies we were doing). I was determined to save his life. Then our goal was to help other families in the same situation, beat this nasty disease.
In 2016, only a little over a year from when Mason was born we were blessed with our beautiful daughter Peyton. She was our surprise baby and added so much joy to our lives. The next few years were relatively smooth sailing – we kept Johnny’s tumor at bay and it remained stagnant, not shrinking like we hoped but also not growing or causing him more deficits. In 2018, Johnny was determined to get off all his seizure meds and I was determined to stop MRI’s – and we did it. One full year of no seizure meds and no MRI’s and we just lived! In 2019, we were blessed with our third baby, Charlie. Going from 2 to 3 kids definitely changed the dynamics in the home and we quickly became outnumbered but we loved it. We loved the craziness, nonstop activity and constant laughter (not so much the screaming and crying but all part of the processJ). With all 3 births we never found out the gender, we loved the once in a lifetime happy surprises. Anyone who knows Johnny, knows he loved kids –especially his own. They are one of the many reasons he fought so hard and was so dedicated to his diet and life choices – never having a sip of alcohol or any sugar from the day he was diagnosed.
The last 2 years of Johnny’s life became more challenging. His tumor was starting to grow again and I was seeing more subtle cognitive deficits that many may not have been seen on a regular basis. Memory issues, vision and multitasking difficulties including several more car accidents, personality changes and a little more weakness on the right side of his body. We met with our neurosurgeon one last time, Dr Tabar with Sloan Kettering who performed all 3 super successful brain surgeries on Johnny. She extended Johnny’s life and is a doctor and friend that I am forever grateful for! We also met with our radiation oncologist, Dr Narayana who was another wonderful doctor to work with and helped to shrink Johnny’s tumor to its smallest size it ever was, back in 2014.
Unfortunately, they both told us surgery and radiation were not valid options because they would leave Johnny with a worse quality of life and would not extend his life expectancy. Two treatments that had saved and prolonged Johnny’s life in the past were now crossed off the list and for the first time and I felt my drive to save his life buckle with the weight of the news. I had a mission though and now was not the time to give up, but fight harder. We’ve made it too far, he’s still so young, and we have children now that need their father.
So I started my research for any and all clinical trials that he may qualify for and spoke to more doctors for their advice and suggestions on next steps – all said the same thing… not much left but a few clinical trials. After 3 clinical trials, several trips to and from the city, Johnny’s tumor began to grow out of control throughout all the treatments. His most recent neuro-oncologist was with Columbia and his name is Dr Peter Pan – yes that is his name and he was an angel. He came at the most crucial time in our journey and I will be forever grateful for his candor, love, knowledge, bedside manner and the time he always gave Johnny, myself and our families.
We quickly had to prepare for what we realized was the beginning of the end. When I look back now, the time went by so fast even though it felt like months. Johnny always expressed that he never wanted anyone to see him in a state where he couldn’t talk, walk or care for himself. Johnny was on hospice/palliative care for only 1 month before he passed away. Our time together ended too soon, but I am eternally grateful that his decline was rapid so he didn’t have to endure any unnecessary suffering. Even during that difficult time we made the best of it – singing and taking rides around the house in his wheelchair, praying and holding hands at dinner, cuddling in his hospital bed and telling him stories, reminiscing on our favorite memories and reading books with the kids. He died peacefully in our home, surrounded by the kids and I. Even though it was extremely sad and still feels like a nightmare I haven’t woken up from yet– his passing was so beautiful and everything I could have wished for him. He is in heaven now, free from pain and suffering. He is strong, happy and running with all the children that passed before their time as well.
This is my message to Johnny:
I love you Johnny – you are the bravest man I know. You are a miracle of life!! You lived 4x longer than any medical professional thought you would. I promise to always tell your story and help other families as best I can that may be struggling with this ugly disease. You are my soulmate! There is a huge piece of my heart missing now that you’re gone that will never get filled completely. I know with time I’ll start to fill that void with the fun memories we’ve shared; the beauty of who you were as it lives on in our children. Every time we dance around the kitchen I know you’ll be there in spirit. Mason has your smile, your laugh and your work ethic – he is so good with kids and truly loves to play with them just like you did. He works so hard in everything he does. Peyton has your mischievousness and gentle soul. When she gets comfortable, her big personality comes out just like you and she gets silly and lovey-dovey. And Charlie has your appetite – wow he can just eat and eat and eat and we have no idea where he puts it. He also has your determination and strong will. I will continue to raise our kids the best way I can, under the guidance of God and remembering and honoring you for as long as I live. You are our angel in heaven now, watching over us and being at every event and celebration. Thank you for choosing me, thank you for gracing us with your presence and giving me the best and most unforgettable 17 years of my life!
Kids message to Daddy:
Mason: I love daddy with all my heart and I love you so much. Thank you Daddy for going in my bed all the time and sleeping with me – I love you so much.
Peyton: I know Daddy loves me and I love him too. I wish Daddy never went to heaven and stayed here BUT I will always remember the way he loved me.
Charlie: If Charlie could talk in sentences – which he is awfully close by the way – he would say Dada – I love you. Thank you for always spending quality time with me, cuddling me and making me laugh. I love you and miss you.
To all of you:
Thank you for your continued unwavering love and support – we never felt alone in Johnny’s battle with cancer. We love you and thank you again for being here today – or live on zoom. As much as Johnny’s life was challenging and was filled with doctors’ visits and medicine, we knew life was fragile and we focused so much on living life to the fullest. Having a terminal illness really makes you put life into perspective and remember what is truly important. Never forget that life is short – take chances and be spontaneous, live life every day as if it could be your last, don’t just tell but show the people who matter to you how much you love them, don’t live with regret and when times get tough remember “This too shall pass” which was tattooed on Johnny’s back.
Love you all – thank you from the bottom of my heart and God Bless
Johnny was a Finish Carpenter by trade and …