Benjamin J. Carey's Blog, page 20

That's Why they Say "Fight" Cancer

It was our first week home. He trembled in pain as I lay next to him in his bed, trying to put him to sleep for the night. It was the first time I had seen him in such agony throughout this ordeal. Sully has a high pain tolerance, and I've never seen him in a condition that would prevent him from falling asleep.

He was having excruciating pain in the bones of his lower back, hips, and knees. At the time every nightmarish possibility ran through my head of what could be causing it. The next day I would find out that it was "neuropathy", a common side effect of Vincristine, one of the chemo drugs he was taking.

"Why is this happening?" he cried, as we lay there next to each other in the dark. He couldn't stay still. I wasn't sure how to answer him.

"It's a side effect of the chemo medicine Sully. This is why they say "Fight Cancer", because it's a real fight dude. You have to fight and fight, no one said it would be easy."

It seemed to make sense to him, but nothing was consoling him, it was horrible, and instinctively I laid my full bodyweight across his legs. I thought the pressure might help, and it did.

It was a rough night, neither one of us slept more than 20 minutes, and in the morning the pain was still raging. We left the house at 7:00am for his scheduled chemotherapy appointment at the hospital. When we arrived the nurses were alarmed at how much pain he was in. He was shaking with the kind of pain I could only imagine if someone was pushing a nail into your skin. It was so upsetting to watch. The pain was so bad they re-admitted him to the hospital. Eventually they gave him Oxytocin, and when that didn't work they had to give him Morphine later that afternoon. I was shocked that they were giving him a drug that they routinely give wounded soldiers on the battlefield.

Over the next day or so they started him on a medicine called Gabapentin, to resolve the neoropathy. It worked.

That was a couple weeks ago.

So much has happened since that fateful day Sunday May 17th when I got the news that my boy had B-Cell Lymphoblastic Leukemia.

Sully spent nearly a a month in the hospital and I've navigated an array of emotional ups and downs, a cycle of good news and bad news. There have been lots of solemn meetings with his doctors, where tons of complex biology and treatments were discussed. Further studies showed that he has a "Philadelphia-like" variant of cancer with a "Jack" signature, something we were hoping not to hear.

Each meeting has concluded with the doctors leaving, and me left alone in the room; sometimes sobbing, but always sitting, staring, remembering, wondering. They are scenes from a Lifetime movie. I love deeply, and as a result the emotions are proportionate.

Our friends and family have been wonderful. The amount of love and support for him and for us has been nothing short of amazing. Two of the most touching moments were the police escort homecoming that our community arranged for him, and the "head-shave party" where 25 of his friends and their dads joined him to lessen the emotional impact of losing his hair.



 Thank you from the bottom of my heart to Lauren & Anthony Picone, Brian & Chrissy Silk, and all of our friends and family who have reached out, sent cards/texts/emails, donated to the go-fund-me, brought dinners, and done so many other thoughtful things. Most importantly we've appreciated the love and concern. There is no better feeling than knowing we have an army of support, and we are not going through this alone. Sully is fortunate. You have been our foundation. Thank You.




Full treatment will be roughly 3 years. It will be a long journey, but we have indefatigable resolve in this family. We are relentless, and we refuse to let anything get in the way of our happiness or living life. This cancer battle is just another inconvenience, and my boy will beat it. With the exception of the meds, chemo treatments, and lost hair we refuse to let the disease cast a shadow of limitations on our life. 




We've had enough lessons in our family already to remind us how short life is, and how important it is to live each day like a story getting the most out of even the most mundane things. I've always taught my kids to live life with an undying love and passion. To appreciate everyday as a gift. This resonates now more than ever.

My ex-wife and I spend the days carting our boy back and forth to chemotherapy and doctor appointments while trying to keep up with our career and business obligations. There are so many weekly blood tests, phone calls, meetings and fights with the insurance companies. We are optimistic Sully will be cured and we continue to pour ourselves into the latest research and treatments. Right now he is on the best path and there are case studies of patients with his condition who have been cured.



I have 4 of the best doctors in the country working collaboratively on Sully's Phildaelphia-like B-Cell Lymphoblastic Luekemia with Jack signature cancer. They are the doctors who have discovered and/or participated in all of the original and ongoing research and studies on this type of cancer. I am grateful for their expertise and interest in his case.

Medical bills have been rolling in, 7k for the ER intake and first day, 15k for the cutting edge Ruxolitinib medicine just approved by the FDA. The fundraising has been a godsend.


My days are mostly so busy that I don't have time to reflect, but boy when things slow down and mostly at night; it hits like a ton of bricks. I look and see a boy that is hard to recognize from a month ago, and I put my faith in God and try and re-focus on the moment before me not the past or future.






I take my own advice and remind myself that Sully is here today, he's with us and that is all that matters. I can still laugh with him, hold him, touch him, hug him, and be frustrated by him. It's a great day. Sometimes that is the only thing we need to focus on.

My bald-headed baby boy rides shotgun with me back and forth to his chemotherapy appointments. We drop the sunroof and windows and play loud music yelling over it to hear each other. The wind blows on us. We laugh and sometimes we speed. I hold his hand and he talks to me about aliens, slime, and politics.

He is happy. It gets at my heart.

I wonder how the FUCK this happened.

read more blog posts

follow Benjamin on Instagram

DONATE









































read more blog posts

follow Benjamin on Instagram

DONATE

Negotiating with God

I haven’t slept much this week. I’ve only slept in my bed once, and not because I haven’t been home for a break or because I couldn’t, but because subconsciously I just don’t want to be comfortable. I watch this kid go through so much every day and I think I am trying to avoid the guilt of feeling comfortable myself. I sleep sideways in a chair next to his bed without pulling out the footrest. On the nights I am home I sleep on the sofa instead of my bed. My mind, body, and soul are restless.

Yesterday he had another spinal tap. The results came back negative and showed no cancer cells in his spinal tract, so I was happy about that. He needs to get 3 negatives in a row in order for them to stop the spinal taps. He has another one tomorrow, and then one next Wednesday.

In the late afternoon he had another chemo treatment, this time with a stronger medicine.

He hates the hospital food so for dinner I ordered him a burger and Oreo milkshake. He ate like a champ and said he felt stuffed and tired afterward. He became very sleepy as the night wore on, and I assume part of it was from the chemotherapy.



I performed my usual routine of trying to make him laugh with stupid antics and jokes, and I asked him if he had facetimed his friends. He often doesn’t want to be bothered he just wants to sit and vegetate which is so unlike him. I remind him every day that it’s important for him stay connected with his friends because they’ll distract him and lift his spirits.

At bedtime he used the two separate anti-fungal mouthwashes which he has to rinse with a few times a day because of the chemo, and then he went to sleep. I went to the family room down the hall and made a few personal phone calls. I returned and sat in the chair next to his bed. The room was dark, and I just sat quietly as I do every night, wondering how we got here. I prayed, and kept my nightly negotiations going with God. And for a little while I dozed off.

I heard him moving around and woke up to see what was going on. He was standing in the dark next to the bed changing his clothes because they were sweaty. He’s such a thoughtful boy, he didn’t even try and wake me up. I told him he needs to wake me up no matter what he needs. I wiped him down with some baby wipes and helped him change and get back into bed.

It’s morning and I only slept about two hours. The sun is up and shining broken rays through the big windows next to us that are all covered with posters and cards from his friends. He is tired and sleeping later than usual. I crawl into the bed behind him and put my arms around him kissing his ear and the back of his neck, stroking his hair while he sleeps. I love this kid so much it hurts. I wish I could carry this burden for him. There’s nothing I wouldn’t do. I’d die for him.

I shuffle down the hall to get a coffee, and then I return to the chair next to his bed opening my computer to start my work day. I let him rest. The nurse comes in and tells me there is a possibility of him coming home next week. Yesterday I spent two hours speaking to his nurse case manager and the doctors about what his home care is going to look like. He lives with me full time and alternates every other weekend at his mom’s. Fortunately, I work remotely so I will be able to handle him. He will not need intensive care. He’ll go for chemo once a week and it’s more about making sure his medicine schedule is perfect and that he is observed regularly for any signs of infection etc.

I am beginning to feel less worry and more determination. This kid is going to kick the shit out of cancer, and this is going to just be another badge on our family coat of arms. I am so grateful for all of the telephone calls, texts, and emails. Ray Nelson, a friend I met through coaching football called me yesterday. I’ve only known him a few years and was humbled by his empathy. I spent almost an hour on the phone with this man that was a complete stranger a few years ago. It’s instances like this that strike me as amazing. They make you not lose your belief in humanity. The authenticity and concern are heart-warming.

There have been dozens of examples like this over the past week. Thank you all. That’s what love is about, being there not only to share in life’s joys but to ease the pain of your friends and family during hardships. It is appreciated more than you know. My children and I will always be there for you on the flipside.

#SullyStrong

read more blog posts

follow Benjamin on Instagram

Dad You Can't Pee in that!

In a flashbulb moment I feel as if I've been hung upside down by a giant and shaken by the feet until I am dizzy and can't see straight.


A couple days ago out of the clear blue, when life was on it's normal course, my 10 year old son was diagnosed with Leukemia. It's shocking, and I've spent hours crying. Sometimes it comes in waves, sometimes it's triggered watching him put through these horrible procedures. Sometimes it's a result of walking by his empty room and the silence in the house without him. I've had to summon all my strength to keep a game face on in front of him and his siblings. 
Everyone faces challenges in their life, but when life hits you in the stomach this hard it takes your breath away. Now I'm stumbling through this "new normal" dazed and confused. The lonely nights have been the worst. The only place I find peace is in exercise, writing, and in the company of my fiancé.
I've researched B-cell Lymphblastic Leukemia ad nauseam, trying to do everything possible to understand how we can win this battle. As a dad I've done everything I can to distract this little guy from the war he is waging whether it's ordering up Indian food on door-dash for him, hooking his X-box up from home to the hospital television, or making him laugh. 


He's on I.V. fluids that make him have to urinate literally every hour or two. The poor kid's sleep is broken because he has to go so often in the middle of the night. He has to use a hand-held urinal because they are measuring his output. Naturally I didn't miss an opportunity to make him laugh when I stood up tonight stone faced and said I have to goto the bathroom and reached for the urinal at the foot of his bed. 
"Dad you can't pee in that!"
"What do you mean?" I asked, and I fell on his bed both of us laughing.
He was miserable yesterday when I told him we had to walk because his back was still hurting from soreness at the bone marrow biopsy site. I got him into the hallway and after we walked a little bit I looked at him and said "listen I'm going to teach you how to windsurf". 
He looked at me confused, and I said to him dead seriously "you just step on here, and you go" pointing to his I.V. cart. 
He smiled, "Dad we'll get in trouble, you can't do that." 
"What do you mean, this is what you do," I said stone-faced.
"Dad..."
"No really this is what you do, get on" I told him.
He smiled and hesitantly stepped on, and of course I gave him a hard shove and he was gone like the wind laughing. 

When I drove in to the hospital tonight I was distracted and drove by the main entrance. A little further up I came upon the emergency room and a heaviness came upon me. As I looked at the emergency room sign the memories of a few days ago came rushing back. Our whole life had changed in a fleeting moment inside of room 11. I will never forget driving there thinking my son was maybe anemic or had a cold only to be told he had a malignancy in his blood. 
We thank you for the outpouring of support we've received over the past few days. 


read more blog posts

The Day No Parent Can Imagine

We had not slept all night and just finished meeting with a team of doctors that delivered news no parent ever wants to hear. Our 10 year old "Sully" had been diagnosed with Leukemia. I had taken him to the emergency room at midnight the previous night, and we were now well into the day after. This was preceded by a 2 week period of peculiarities that alone did not seem like a big deal, but when added up their cumulative significance had given me concern to get him checked out. 
People have different ways of dealing with stress. Some men drink, some golf, and some play cards or have other hobbies. I don't drink, and although I golf and play a little cards I have always leaned on exercise and writing as my main outlets. My blogs and books have been therapeutic, and I'm happy to have received emails and calls over the years from people who have been inspired by them.
I am divorced but maintain residential responsibility for my kids. I am a simple family guy and we are inseparable. Family; being a good father, husband, human being -- it is and always has been everything to me. 
For the past two weeks my little Irish firecracker Sully had been acting sluggish and uninterested in exercising with his siblings or going outside to play. I chalked it up to the Quarantine life: lots of X-Box, tons of junk food, and an irregular schedule. 
One day he complained about a headache, but had no fever or other symptoms. Another day he got angry because I forced him to get off the video games and go outside to play. He went for a run with his siblings and normally dusts them because even though he is younger, he has always been faster. On that day he fell behind both of them. 
One day he got a nosebleed while I was giving him a haircut. I smiled and asked if he was picking his nose and he said no. Another day he told me his legs felt "heavy". 
There were a couple similar instances while he was at my ex-wife's house, but none of them alone struck us as alarming. 
One day he had a few more bruises than normal and I warned his brother to stop wrestling with him. None of these things alone were unusual. 
He is Irish, and pale as hell, but he had been looking exceptionally pale recently. I also began noticing something in his eyes that just didn't seem right. They were dark and lazy. I checked his pupils and they dilated properly so I wasn't concerned. I chalked it up to the obsessive amounts of time he was spending on the X-box with his friends. 
He had another headache and I finally ended up cutting off video games for the time being and ordering him gaming glasses. I didn't want to eliminate the video games completely because nowadays there is a social element to them, but I thought maybe the games were giving him a headache. 
Finally he had a day at the beach with my ex-wife and his siblings and after the beach he was uncharacteristically exhausted. He cried and had a meltdown saying that he "didn't have the energy to play anymore". The kid normally can't sit still and never rests. 
When he returned home to me the next day he seemed okay, but when I put him to bed he got back up to goto the bathroom. When he came out he said he had diarrhea. 
"Huh?" i asked. "What do you mean diarrhea, was it like just soft or watery" I asked. 
"Watery" he said. 
He proceeded to tell me he had it at his moms but failed to tell her about it. I told him to get into my bed that he was sleeping with me tonight. When I went to tuck him in he said it hurt to lift his pinky because he was so tired. 
At that point I called my ex-wife and told her I was taking him to the emergency room.

"Wow I didn't realize that diarrhea was so bad" Sully said. 
I smiled and explained it wasn't the diarrhea alone, that it was the combination of everything. The tiredness, the heavy legs, the nosebleed, and the headache, and that I needed to get him checked out. I told him to get out of bed and get dressed. 
He stood up and when he did his gait was so weak it was like watching someone with polio take a few steps. I became frightened and when he saw the look on my face he started crying. When I picked him up his heart was racing a mile a minute which frightened me even more. I wasn't sure if it was an episode he was having or if it was anxiety, but I knew I needed to get him to the emergency room as soon as possible. 
Upon arrival at the ER at Cohen's Children's hospital, he insisted that it was me he wanted to accompany him inside. They only allowed one parent because of the COVID quarantine measures in place, and my boys and I are very close. 
In the next few hours all of my worst nightmares would unfold. I thought at worst he was anemic, I never expected what was about to happen. 
When the first blood test came the ER doctor began to explain, and I started crying. He asked me to come into the hallway. He told me there was a malignancy in Sully's blood. They thought that it might be Leukemia and were awaiting confirmation from the lab and hematologists. 
I am strong but not afraid to show emotion. I had a meltdown, and thankfully while I was in the hallway Sully had fallen asleep. Throughout the course of the night and next morning the updates and blood results got worse. 
So now, after meeting with the full team of doctors, my ex-wife and I had to go into the room and tell him the news. He is one of the most perceptive and intelligent 10 year olds I know, and his reaction was very adult-like and on par with that. He was also in a foul mood when we entered the room.

We started calmly explaining things to him in a roundabout way, and he immediately and directly, almost antagonistically asked "Is it Cancer?"
My ex-wife and I paused and looked at each other and didn't know what to say. Finally I looked at him and said "Yes".
He screamed and cried "OH MY GOD! CANCER! OH MY GOD IT'S CANCER!!!"
"WHY? WHY ME?" he cried. 
I turned away and burst into tears. It was the most heartbreaking moment of my life, and believe me I've unfortunately had a lot of those moments. 
I went on to eventually bring him back to his senses and soothe him. His mother had cancer, and part of his reaction I'm sure was a result of witnessing what he saw her go through. I had to explain that not everything was the same, and answer a lot of questions that he had. 
I'm a nasty MF. I survived a poor abusive childhood, I beat alcoholism and got sober in 1990, I had life-saving heart surgery for an aortic aneurysm in 2009, I nursed my ex-wife through a brutal 3 year cancer battle; running the family alone, draining her chest tubes everyday, and literally wiping her ass when she couldn't. I have become comfortable with adversity, in fact I thrive in it. But this........ this was a whole new level and I was defeated. 
I have spent the last 24 hours crying. I went home to tell his two siblings the news. They knew something serious was going on and had spent the whole day together by each other's side. They were shocked when I told them, and had a million questions for me that I did my best to answer. 
I fell asleep on the sofa exhausted. The two of them slept next to each other upstairs, undoubtedly finding comfort in one another. 
The next morning my head was so heavy. I woke up and realized it was real and not a bad dream. I went back to sleep hoping it would go away. I took a shower and just when I thought I had it together I broke down seeing his room empty, the house quiet, and no wrestling matches or fighting to break up between him and his brother. I could not stop crying. 
This will be the new normal, and it is gut wrenching. My only comfort has been the words and support of my mother, some friends, and I thank god for my fiancé Lisa. I would be in a very dark place without her. She fills my soul in ways that I never could have imagined, and it all makes sense now.
Tomorrow he is having a spinal tap, a bone marrow sample, and having a medi-port installed for the chemo drugs to be administered over the next 3 years. There will be a poisonous cocktail of chemo drugs, more spinal taps, more bone marrow samples, and lots of tests in the days ahead. He will not be home from the hospital for a month, and he cannot see his siblings. Only his mother and I are allowed to visit him in the hospital due to the COVID-19 restrictions in place. 

This seat next to the hospital bed is a familiar place for me. My younger brother has had over a dozen heart surgeries since he was an infant and had a heart transplant a few years ago. We are "Carey Strong".
But this....... it is Kryptonite. I sit here alone, exhausted thinking about what is to come. This little guy next to me -- so innocent, so pure, so angelic. He is not like the rest of us in the family. The rest of us can summon the most nasty and aggressive fight and survival mechanisms at will. Sully does not have that same streak. 
He is strong, he is a fighter, but he is so pure and angelic. I worry about him more than the others. 
I connected him with some of his friends on Facetime tonight. It was so sad sitting there listening to him explain things in his own terms:
"I have cancer, but it's only in my blood, it's not so bad."
"I might not lose my hair."
"I should be going home in 2 to 4 weeks."
"I don't have to have surgery so it's not so bad."
and the last thing he said when he hung up his iPad and got off with them:
"I didn't realize so many people cared about me"
What 10 year old says that?


He fell asleep and I went down the hall to speak with Lisa and say goodnight. I have learned to focus on the positive, because the dark side can quickly drag you down. 
I put the railings down on the side of the bed and took my shoes off. I pulled my chair next to him so I can put my arm around him while he sleeps. It's uncomfortable for me, but I have my palm on his chest and can feel the rise and fall of his lungs and the buzz of his heartbeat. The same things I felt when he was an infant and would fall asleep on my chest. 
Lord please watch over my sweet boy and my family. Give us all the strength we need, and help us in our darkest moments to find the light. Sully I will never leave your side, you are my little shrimp forever. 


read more blog posts

The Last Sunrise

You won't know the last time until it never happens again. The last time they ask to be tucked in, the last time they ask to hold your hand, the last time they sleepwalk into your bed because they had a bad dream. The last sunrise. 

Life is a series of a million tiny miracles. Magnify them. Embrace them. Do it before it's too late. Say it before you run out of time.

Four years ago my middle son PJ asked me if I could take him to see the sunrise. It seemed like an odd and mature question for a 9 year old to be asking, but I obliged and it turned out to be an extraordinary time that I would never forget. So much so, that I turned it into a tradition that I would do with each of my other two kids. A year later I took my oldest daughter Milan.

This morning I finished the cycle and took my youngest son Sully to see the sunrise. Perhaps I'm using "the last sunrise" for dramatic effect. But there will never be another first. I know it won't be as easy for us to find time to see a sunrise as they grow up and head into their own lives. They will carry this tradition on with their children, and I'll continue to enjoy sunrises with my best friend Lisa.

Sunsets are beautiful, but there is something about Sunrises that makes them more special. It starts with the ritual of having to get up in the middle of the night and head out into the pitch dark. There are few if any people around, a reminder of how exclusive this love affair is. The rays of first light flirt with the sky, and then suddenly you see that first sliver of orange sun crack the horizon. It's a birth of sorts, a reminder of the miracle of life and how small we are in the universe.

Sully and I shared hot chocolate and chatted as the sun came up. It was more like an interrogation, he has so many questions compared to my other two kids. It was bittersweet to see how much he has grown, to reflect on this timeline of life, and to come to terms that this will be the last sunrise.
























read PJ's sunrise  read Milan's Sunrisesee all blog posts

Moments We Never Forget

➡️ 1979 The Iran Hostage Crisis➡️ 1986 The Space Shuttle Disaster
➡️ 2001 The 9/11 Terrorist Attacks➡️ 2003 The Great Blackout.

Mini Maniac Triathlon

"What a father means to his son growing up, will become what a son means to his father growing old."



A month ago I did my first triathlon and raised money for breast cancer. Naturally my 12 year old and his buddy took it upon themselves to find one to do. Very proud of them both, not just for finishing, but for the commitment and time they put in preparing for the event. 


5:00am Wake Up - LET'S GO!






















































read more blog posts

The Best Things in Life are the Memories you Make with your Children

Split Rock - Lake Placid 2019























































































read more blog posts

The Big Easy

New Orleans is unlike any city in America. It's cultural diversity is woven into the food, the music, the architecture - even the local superstitions. It's a sensory experience on all levels and there's a story lurking around every corner.—Ruta Sepetys
I've always wanted to check out New Orleans, and I had the opportunity to visit for the first time with PJ for a football game. It wasn't the way I anticipated ending up there, but it was a phenomenal trip spending time with my boy and mixing in some football. He was the MVP of a regional summer camp, and as a result he was invited to the All-American Bowl to play in games with other 10 year olds selected from around the country. The football was great, the people were friendly, and the food was everything I thought it would be. Poets, palmreaders, streetfairs, artists, musicians: the city had a lot of character, and to me it was emphasized by it's notable resilience after Katrina. Stories about the storm were plentiful with the locals, and we even had a chance to ride through the ninth ward, the area hit worst. It is amazing that 12 years later cement slabs remain where homes once stood, and the rebuilding is still going on. I looked out the window at the canals and wetlands as we drove through the neighborhood approaching the Claiborne Avenue bridge, and could feel the weight of the water surrounding the area.  I can only imagine the helplessness and horror those people felt during the storm. The French Quarter and Creole food was awesome, but I have to be honest those French Beignets were good but over-rated. I think our NY Italian Zeppoles are better. 















































































































































read more blog posts

Sunrise and IHOP

To a father growing old, nothing is dearer than a daughter.
—Euripides

read more blog posts