Benjamin J. Carey's Blog, page 2

When Heads Break Off

I was on my knees playing with Sully in a snowstorm. It was a cold and gray vignette, and the snow was coming down hard. The strong wind blew snowflakes onto our faces that stung, and as we pushed together mounds of snow it became very cold. At one point I looked over and saw that Sully's body had become frozen stiff. He stopped moving and his flesh was solid like ice.

He was gone. 

I wasn't sure how or if I could fix him. I went inside the house, for what reason I'm not sure. I stood there for a moment confused, and then went back outside. 

I looked at him frozen, now with huge layers of ice covering his body. 

I wrapped my arms around him and tried to pull the ice off of him. When I did his head came off, and I panicked. 

I held his head in my arms trying to make sense of what had just happened. I  ran my fingers underneath his decapitated head and to my dismay the inside of his neck was soft flesh, it wasn't frozen like the rest of his body. 

I cried.

I woke up and sat up in bed, my heart racing. 

Another one of the many bizarre nightmares I've had over the past year. 

Sully had a 10 day break from chemo recently and spent most of that time visiting his grandmother in Saratoga. He didn't do much because his immune system is still not at 100 percent, but he enjoyed the change in scenery and seemed refreshed when he returned home. 

This past Monday he told me he was out of breath and asked me if it was from the chemotherapy. 

"No, it's because you spend almost all of your free time on the X-box" I told him. 

"Maybe I should start working out again" he said. 

"Good idea, we'll start tomorrow"

"But my platelets are low I don't know if I'm supposed to do that."

"You're fine, you just can't bang up your body" I replied. 

So with that we started an easy routine of running and calisthenics. Hopefully he will stick with it. 

His birthday is April 14th. 

I can't believe it hasn't even been a year yet. He was diagnosed last May with B-cell lymphoblastic leukemia with Philadelphia signature. 

He is happy. I am happy. F#ck cancer. 

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Managing Sunrise

Last week when Sully's ANC (his immune level) was up, we ventured out for a rare trip to a restaurant. Normally we don't go out much because his ANC is low due to all the chemotherapy he is getting. He asked to go to "Hibachi" and that's exactly what we did while my other two kids were away. 

The two of us enjoyed a nice dinner and lots of laughs. After our ritual conversations about politics and computers we imagined that it would be a cool Tik Tok video if instead of the chef spraying Saki in people's mouths and doing tricks on the grill that he spray the patrons with soy sauce. 

It was nice to get him out and see him eat like a champ and enjoy himself. We are a good team, we had the whole table talking and laughing during dinner.

Almost a year ago I wrote this post about taking Sully to see the sunrise at the beach. It was a picture perfect morning. Sometimes I go back in my head and try and recapture the memory. The world was perfect, just another father son bonding moment in the sand and salt. As we played on the beach that morning I had no idea that he would be diagnosed with Leukemia only a month later. 

We are into his treatment almost a year now, and sometimes I can't remember what it was like before he had cancer. 

There are all the normal stresses of life, raising 3 kids, and running a marketing business during COVID. Then there is this fight we are in. There is an excess of doctor appointments, chemotherapy sessions, spinal taps, finger sticks, pharmacy visits, pills, potions, and creams. I juggle it all like hot embers from a fire. 

Most days our collective optimism eliminates room for any doubt, and on the bad days I don't know who the fuck is juggling, but we still get through them. In a weird metaphorical sort of way I find myself trying to manage sunrise -- just get through 24 hours and make it to the next sunrise. 

It has changed me. It has changed us. It has been a magnifying glass to see people's compassion and occasionally their lack of. It has made us appreciate each other and the value of a moment. The kids have stopped telling me I take too many pictures. They finally understand why I do. They've gotten used to me yelling at Sully to take his pills or get off the X-box. 

Sully: he who spends an exorbitant amount of time on the X-box and Tik Tok; and I who begrudgingly bites his tongue and allows him one of the few things that gives him pleasure under the circumstances. 

"Oh...... killing people or watching 'dumb TV' again?" I ask as I walk by his game room, shaking my head. 

He smiles at me like I don't get it. 

I do get it though. I know it's one of the few things he does where he is able to socialize with his friends. I can't remember the last time we ran together, biked, or had a catch; all things we did regularly before cancer. I can't remember the last time I saw him sweating, chasing his friends, or running from the wraith of his brother who he pissed off. I can't remember the last big sleepover with his friends. He has mostly been too weak for it, platelets too low, his ANC has been too low, or there have been other circumstances restricting him.

During one of the recent snowstorms I went against the grain and sent him out to play with his brother and sister.

"I wish I could go out and make an igloo with Milan" he said. 

"Go ahead" I told him.

"Dad my platelets are low they said I shouldn't go sledding or play in the snow" 

"You aren't ruled by this Sully, I don't care what they said. Go ahead, go out, just don't do belly flops into the snow."

"Are you sure, they might get mad" he said. 

"We rule Sully" I said, with that same maniacal smile dads have when they build a ramp for their kid to jump with their bicycle.

I watched him out the window, jumping and running in the snow for over an hour, and making an igloo with Milan and Preston. 

When he came in he was completely exhausted and took a long nap. No catastrophes. 

He sits in his glitzed out gaming room day-after-day in between online classes as the rest of us come and go. But he's happy. 

I hear him laughing with his friends, and every once in a while I hear someone whose voice sounds exactly like his cussing up a storm and saying things my son would never say. 😆 

He is my pride and joy: my smart, handsome, blond hair, blue eyed, boy to the core. An old soul, a man's man at 10 years old. He has an undeniably happy disposition and the best sense of humor. 

Last week I had the chance to speak with Bill Fetzer, a dad from Oyster Bay who runs a foundation for his son Matthew who had Leukemia. A friend put me in touch with him.

There is nothing like talking to another father who has been through this. It is a familiarity I wish I never knew, but it is a great feeling to talk to someone who has felt all the same emotions, encountered the same challenges, and is simply there to listen and fill-in the blanks for you where other people can't. 

Bill's son Matthew had very close to the same type of cancer that Sully has. His battle went on for many years and there were some setbacks. Ultimately Matthew succumbed to the cancer and passed away. That was the hardest part of my conversation with him. I cannot imagine such a thing, and it was a reminder that every god damn single day with my son is a gift. 

The emotions from that call and from this fight bring me to a place where I see everything as a gift: the air I breathe, the sun on my face, the touch of someone's skin. I am blessed, these are things that some people don't pause long enough to even entertain because they are swallowed up by the distractions of everyday life. 

I have always been an optimist, I have always enjoyed the life God has given me no matter what the circumstances. This experience has amplified that perception. It has been sensory overload and an even greater appreciation for people and the little things. ✌️

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Chalk Lines and Dogs that Kill

I can’t sleep. It dawned on me that Sully will be 11 in two months. There is that number again. 

The room is dark and Sully lay on my shoulder. We are in his bed. My little Martian man with his long skinny legs and arms, pale skin, and bald head. His hand is inside of mine on my chest and I feel his little fingers fidgeting as he tries to fall asleep. They are so tiny and I realize soon these moments won’t happen anymore because he’ll be grown up. My mind wanders to the usual places as we lay there in silence, the subtle glow of the moon casts shadows from the window panes and a gray tint onto everything in the room.

Most of the days are good as we continue chipping away at the 3 year chemotherapy program. A few days ago however was not a good day.

We arrived at the hospital for his chemo session. The valet took our car, the security guard at check-in knows us and already had our passes printed. We exchanged pleasantries and continued on to the elevator to the 2nd floor. 

As usual the room was full of kids of all ages who had cancer.  Sully was called for his finger stick and went in without me. I stopped going in with him for that a while ago. His finger stick became a ritual and confidence thing that makes him feel independent and brave. 

He’s back in 5 minutes and we wait to see the doctor.

Eventually we are called in and put in a treatment room to wait. As we are sitting there I remind Sully he has to take his meds that we brought. I hand him his pill case from my bag and I resume working on my laptop as he takes them. A few minutes go by and suddenly I hear water hitting the floor and it sounds like a fire hose. I look up and Sully is projectile vomiting and it’s blasting all over. I quickly move him to the sink, and he immediately motions that the garbage pail is probably a better option. I rub his back and tell him it’s okay as he heaves into the trash. A nurse comes and throws towels on the floor which is plastered with puddles of vomit. He’s embarrassed. I tell him it’s okay and that things like that happen all the time, that it’s nothing to be ashamed about.

“What happened do you feel okay?” I asked.

“I gagged on my pill and it made me puke” he said.

For a moment it had created a stir on the floor, but things calmed down when they heard he had gagged on his pill and was not sick.

They moved us to a different room. We had to step on towels and in between puke puddles to get out. It looked like a crime scene.

“They should throw down chalk lines” I said as we exited. Everyone laughed, and Sully asked what that meant.

Soon the doctor came and examined him. He had a bump on his belly a couple days ago, and another one had appeared overnight. They were red and sore and the doctor seemed very concerned. She called in the infectious disease expert to evaluate them. 

The specialist came and checked the bumps and didn’t seem alarmed. She told us they were likely just infections from his ANC (immune system) being low and that she would prescribe an antibiotic. She also told us that she wanted to biopsy one to send out a sample and make sure it wasn’t anything more serious. 

I watched Sully’s face flatten when he heard her say biopsy. I reassured him it would be okay and would just feel like a little pinch. Meanwhile I had no idea what the fuck I was saying, I just didn’t want him to feel scared.

We were sent upstairs and they did the biopsy before his chemo session. He laid in the bed and I held his hand, and she did it quickly.

He winced and I thought it was over. 

“Great job, see it’s done!” I told him.

But then to my surprise his face turned a delayed red and he started crying.

“What’s the matter? Are you in pain or are you just afraid?” I asked.

“I’m afraid” he cried.

I felt horrible, the poor kid is so innocent.

I looked at him sternly. 

“Look at my face” I said.

“It's okay. You don't ever worry about anything, I’m here with you and I will never leave and you don’t ever have to feel afraid of anything. We are in this together and will kick ass.” I told him.

I may have also used some colorful expletives in that pep talk.

He smiled, and we moved on to watch the news together as they administered his chemo for the day.

Later on the ride home our conversation was entertaining as usual.

“Are the British Irish like us?” he asked.

His unique questions and opinions kept me laughing and entertained, and quickly washed away the drama of the morning.

“You can come and watch us skeet shooting this spring when it gets warm” I told him. 

I had to explain what skeet shooting was. 

“Can we bring Lennox?” (our dog) he asked.

“No Sully you can’t bring a dog to a shooting range.”

“He’s a hunting dog though.”

“I know but it’s not hunting”

“Well maybe we can bring him to Texas with us when we go”

“Only if we drive” I said.

Our dog is a Viszla. A Hungarian hunting dog, cousin of the Weimaraner.

“What was Lennox’s name before we got him?” Sully asked. 

“What do you mean he was a puppy he didn’t have a name” I replied.

“You said he was in the Hungarian army” he said. 

I laughed out loud. 

“Yes, oh yeah” I said. 

“Asiiiiiiiiaaaaaaago HIKE!!” I yelled out. 

Sully laughed hard.

I had told him years ago that Lennox was a Hungarian war dog and responded to attack upon the command “Asiago, HIKE” a silly phrase that I must have conjured up on the spot from a combo of my favorite cheese and the football command for snapping the ball. Over the years I would have the kids laughing til no end as I would stand in the kitchen and demonstrate. 

I would draw out “Asiago” as long as possible and finish with an abrupt “HIKE!” and Lennox would go batty. The dog loved the playtime and the kids were amazed and begged for more. 

The only house on the block with a cuddly floppy eared dog that kills.

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Dad I'm NPO

 

It's the first week of 2021 and all I see in my social feeds are resolution posts and dozens of inspiring proclamations to do better this year. Me? It's 8:00am and I'm sitting here in the hospital with a lump in my throat trying not to spill out my emotions as I watch my son prepare for another spinal tap. Dramatic? Perhaps if you're reading this and not living through it like us. 

With every week that has gone by since May none of it gets any easier, we just get a little more numb to it. From the moment we arrived this morning Sully said "I hate that place". 

"What place" I asked. 

He pointed to the emergency room.

"It gives me bad memories" he said. 

I've felt the same way on many of our visits but never vocalized it. It's the first time I've heard him say anything like that. I don't even know how to reply to him so I just tell him it's okay. 

He's so good with his routine and the array of medication he takes 3 times a day. Last night he told me before bed "don't forget dad I'm NPO for tomorrow". 

"Right so no more snacks" I said as he finished a bag of pretzels and we both laughed. 

NPO means no eating after midnight before his spinal tap procedure. 

There are times during this ordeal where I feel like I'm just putting one foot in front of the other and trying to hold it all together for him and his siblings. Emotions run high and low and then there are the times like last night where I'm numb and I just go through the motions. 

I started taking down the Christmas tree after the kids went to sleep which led into pretty much taking down every single decoration in the house and packing them away. Normally a whole day's work but once I started on the tree I zoned out and just kept going. Sometimes being a single dad running the house is fucking exhausting. I'm not complaining, I wouldn't have it any other way, but there is always so much shit to do some of which I never had to do before. There is no manual, we do the best we can, and surely make mistakes along the way. Apologies and hugs keep us thick like thieves. 

I sit here in the hospital this morning watching over him and I can feel what he feels before it even happens. Empathy at it's best. I see the look on his face in the moments before they insert the big needle in his medi-port. As often as they do it I'm sure it never gets easier for him. I see the fear on his face, I know he still thinks of that one time they messed it up. 

Finally that part is done and we wait while the spinal tap team begins to assemble outside the door. I watch the solemn look on his face as he sits in the bed and watches the doctors and nurses appear. Even though he is silent I can feel his anxiety. He is good though. He's all business and never complains. It seems harder for me than him. 

The anesthesiologist arrives. He's an awesome doctor always full of the cheesiest jokes you've ever heard. He has us laughing quickly and I stand at the bed rubbing the fuzz on Sully's head as they prepare to put him to sleep. I tell him I'll be there when he wakes up, and of course I always get choked up at this point. I don't care how much of a macho badass you think you are, you've never felt knots in your heart like this until you've seen your own kid in this space. 

Normally they kick me out at this point but today they allow me to stand on the other side of the curtain during the procedure. It feels like an eternity, and the nurse comes to my side during this time to review his blood tests and list of medications. There is a new drug, and some updates. I see her lips moving and nod repetitively but my mind is not there. I know I'll have to review it all later on the photocopy she's giving me. 

The procedure finishes and when I return to the bedside my boy is asleep. He sleeps for quite a while, and while he does I order door dash so that he can't eat when he wakes up. 

We eat, and then we sit all day as they pump the 3 different chemotherapy drugs into his port. I am so sad. Some days it just hits me like that. I sit in the chair next to the bed and the hours pass by while everyone else goes on with their normal lives outside of here. I work on the computer, I read a little, but mostly my mind wanders into different places, some happy, some dark. 

Sully watches cartoons all day except for the time I convince him to play tic-tac-toe against me. He doesn't want his iPad or anything, he just wants to lay there today which makes me more upset.  

I am so grateful that we made it through the holidays with smiles on everyone's faces. They think I'm a superhero, they have no idea how many sleepless nights I have had, and that's the way it should be. 

Sully is resilient and almost always upbeat. He handles everything in stride but I could never put into words how hard or painful this has been for me personally. I'm not a superhero, a mere mortal, imperfect at that. 

I enjoy bloging, I do it for selfish reasons not for sympathy. It's a great therapy and way to keep family and friends in the loop without having to answer 100 calls or texts. I get emails and connections from strangers going through similar challenges, and all I can say is keep chopping wood, this too shall pass. 

I've drowned myself in work and abused my body in the gym as an outlet, but frankly the only space I find any real peace is in the company of my fiancée. Nothing makes me happier than sharing life with her, training together, listening to her quirky stories, and caring for her in ways that feed my soul.

It's dark outside. At some point we'll be released. He's retaining fluid today so they're keeping us longer. It will be a long drive home, and we need to come back again in the morning. I'll shoot for a workout tonight to exhaust myself, and this little guy will sleep off the chemo drugs. We'll string together a few more of these days and call it a week.

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Cancer, Chicken Salad, and Number 11

 

 

We've been up and out early to Sully's weekly chemotherapy appointments. Sometimes they last a couple hours, sometimes we're there from 8:30am until 7:00pm, and other times we're in-patient for 4 days. It has become a part of our regular routine and we knock it down while handling the rest of our affairs. It's been an interesting year for sure, with COVID adding to the challenges. These kids going to school virtually stay in their pajamas half the day, lay in bed with their laptops, and occasionally they sit up at a desk for class. It's not just my kids, it's most of their classmates too. They have become all too comfortable with this new way of learning. 

My kids have managed to stay on honor roll, but this new way of doing things seems to have dulled their spirit. I wonder when things return to normal if it will be difficult for them because they've become so comfortable at home, or if they'll embrace getting back into the classroom. Only time will tell. As for Sully the virtual learning has been a blessing because he could not return to the classroom right now even if it was in session because his immune system is compromised from the chemotherapy treatments. We are hoping that he will be able to return in the spring or sometime soon after. 

It's hard to believe that it's been almost 7 months since that night back in May when he was diagnosed with Leukemia. It was the worst night of my life. The number 11 has been a recurring theme in my life since I was a child. It hasn't always been a bad omen, just something that seems to mark and emphasize notable events in my life; beginnings and endings, good things and bad things.

I remember how uncanny it was when the doctor in the emergency room told me there as a "malignancy" in his blood and that there was a chance it could be Leukemia but further testing needed to be done. I started crying and looked over at him in the glass bubble, immediately noticing he was in room 11.

 
The days since then have taken on a new importance, but we have somehow found consistency in our daily routines.

Last night I went into the kitchen after doing some work in my home office and I caught Sully making chicken salad. Maybe it's me, but I was impressed. It reminded me how independent, driven, and undeterred this 10 year old is. He is so smart and ambitious and sometimes seems more self-sufficient than my teenagers.

As he was putting the container into the refrigerator I asked him what he was doing and he replied matter-of-factly, 

"I have class at 8am. I made chicken salad so that I can have lunch on my break."

I had everything I could do to not laugh as he walked by me with his chest puffed out and proceeded to the basement. He returned slapping a bag of frozen rolls onto the counter to thaw for morning and exited the room in a strictly business manner without even making eye contact with me. 

Just another day. 

I love him.

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Day 186 of 1,095

Sometimes we're in the hospital for 4 days in a row for chemo, and other times we are just there for the day. 

These day trips to chemo: I never would have imagined bonding so closely with my son in of all places, the car.

We put the numbing cream on his access port before we leave the house so that it has time to work before they connect him. We've learned to make sure he has a full stomach so we don't have to stop on the side of the road for him to throw up. 

The sun rises, we turn up the music, and I feel the soft skin on his tiny hand inside of mine. I hold his hand almost the entire ride. I don't allow him to use his iPad during these trips. Sometimes we talk about politics or gaming, and other times we just sit silently and listen to the music. 

My father left when I was eleven years old and I didn't have contact with him for more than 20 years. Perhaps this is why loving and being loved has become the driving force in my life. There's nothing I want more, and nothing I do better. I can't imagine having no contact; not talking to my children or not having a relationship with them. I wanted the perfect family, and even though what I have been left with is far from that, I'm okay with it being perfectly imperfect. I thank God that every time life has brought me to my knees something spectacular happened or someone special appeared in the wake of it. A life lived with such highs and lows has been like the Running of the Bulls in Pamplona, but it has taught me that nothing else matters but trust, love, and kindness. If you're in my circle you can count on me for that.

Yesterday while I was giving my older son a haircut Sully came into the room, and I noticed new growth on his head. There's roughly 909 days left of his chemo program, so I'm not sure if it will disappear again during one of the cycles, but for now I took the opportunity to clean it up.  I trimmed the soft fur that was growing slightly over his ears, and I ran the clippers along the back of his neck to clean up the base. My mind wandered as I rubbed my hands on his head trying to remember what he looked like with his thick blonde spikes. 

I was thrilled that his last MRD reading was negative. He is so easy and simple, and outside of being occasionally tired and cranky, he is usually in good spirits. He is continuing his normal schooling albeit virtually, but it's not so bad because there is a virtual component even for the healthy kids due to the COVID mandates. His teacher Dr. Fitzsimmons has been a godsend and gone above and beyond for him. 

My other kids have been trying to navigate the COVID changes to their normal school and sports schedule. My oldest is finishing her last year of high school, and my middle guy made honor roll again. They are great with Sully except his brother shows no mercy wrestling with him. My fiancé is the light in my life; my peace & serenity, and my mom and some of my friends have been kind and helpful, and constantly checking on us.

The nurses at Cohen's Children's hospital have been phenomenal. They are always so upbeat, kind, and accommodating. They make you feel like family, not like they are doing a job. During our last hospital stay Sully got tired of losing to me in scrabble (they have to beat the old man on their own I show no mercy), and bored with my jokes and banter so he took his IV cart and roamed the halls outside our room. One evening I lost track of time and realized he was gone for an hour. When I found him he had convinced the nurses to use their computer to play Call of Duty. They were all laughs when I found them sitting at the nurses station and they told me how amazed they were with his 1980's movies knowledge.  

Like many businesses and industries COVID has hammered my online marketing business. Life is not what it used to be for anyone right now. I try to juggle the challenges and stay positive while we chip away at the calendar in this face-off against cancer. Life is what you make it.

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When he Cries

Today we reported for blood tests to see if Sully's levels are high enough yet to start his next wave of chemotherapy. He's been holding for 3 weeks because his ANC and platelet levels have not been high enough to begin. Inasmuch as cancer treatment is advanced, the general idea still seems arcane to me. The chemo drugs kill all of the cells including the good ones, and as a result there are recovery periods in between to allow the body to naturally build back the good cells. It is a delicate process of killing every Leukemia cell over the course of 3 years without compromising the host.
So far Sully has been a trooper, but he is nonetheless still a frightened 10 year old boy whose normal life has been uprooted by Leukemia. This morning was accompanied by his usual anxiety about getting "accessed" the procedure in which they tap a large needle into the medi-port that was installed under his skin months ago. He obsesses with me each time before we leave the house about putting the numbing cream on the area so that it has enough time to work by the time we arrive at the hospital. This part -- these recurring instances remind me that no matter how much we say this is the "new norm", there is really no such thing; it's really that we have just become oblivious to the affairs thrust upon us.
We arrived for his appointment, he sat for his finger stick and made his usual request with the nurse to prick the "side" of his finger. We returned to the waiting room and eventually the doctor came to see us and informed us that his blood levels were finally high enough to resume chemotherapy. After waiting for 2 hours we were summoned to a treatment room so that a nurse could stick the needle into his medi-port and attach the hose for the upcoming week of chemo. A young man arrived, not the usual nurse who handles the procedure. I could see some anxiety in Sully's face. On two occasions in the past in which he had a different nurse do this they messed up and the doctor had to come and handle it.
The man proceeded with the process, he talked to Sully kindly, but I sensed a tremendous lack of confidence in him, he seemed new and nervous. I'm sure Sully picked up on the vibe as well but neither of us made a fuss, we didn't want to insult him. 
Sure enough he messed up inserting the needle, and before I knew it he had apologized and left the room. After the man left Sully started crying in a delayed sort of way. It wasn't from any pain, my sense is that he probably felt violated, like an object, like a pincushion; and the anxiety of having to be subjected to it again was overwhelming him. I reached over and rubbed my hand over the soft skin of his bald head. "What the hell" I said. 

I reassured him it wasn't a big deal and that it was going to be fine, but it didn't prevent the shaking, and the tears from falling, or his eyes from turning red. When he cries it breaks my heart. It puts dots on this timeline of life and causes me to wonder how the hell we got here. 

Soon the usual nurse appeared and handled the accessing. It was over in a pinch, and of course Sully reminded me why he only likes two specific nurses doing the accessing. I told him I would speak to the doctor and in the future we wouldn't let that happen again. 

Tomorrow he'll be readmitted to the hospital and stay for a few days for this part of the chemo program. I stay positive in all my interactions with him and remind him this is not a big deal, it's just a job that we need to get done and before you know it will be behind us. He is attached to my hip more than ever now which results in some interesting experiences. He has no problem giving me advice after hearing me on a business call, he repeats humorous bits of other conversations that he probably should not have heard, and has been subjected to watching shows that he normally would not choose on the rare occasion I get to turn on television before retiring for the day. He's grown an affinity for classical music as a result of watching Mozart in the Jungle with me, an Amazon prime series, and was quick to explain the characters and adult themes to my fiancé when she was visiting. He cracks me up and continues to amaze me. 

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Road Trip Mt. Marcy

 

My sons and I took to the road for an overnight trip to the adirondacks. From Keene Valley we hiked in to Marcy Dam and set up base camp. Our goal was to climb Mt. Marcy the following day, but weather put a damper on it. 

Strong thunderstorms rolled in with heavy downpours. The thunder and wind were so loud overnight. It felt like we were sitting right under the heavens. We stayed dry in our tent and lean-to but the next day presented with more drizzle and low visibility so we climbed Phelps mountain, a much shorter route, and then packed up camp and left for home. I taught the boys how to set up a safe base camp, cook freeze dried food with a primus burner, carve with their new knives, read a trail map, and use a compass. We read from "creatures great and small" a book I've been sharing with them, and of course the trip was filled with questions about the universe and the usual adolescent potty humor.

It wasn't a planned trip but it's important to do and say the things that come to mind with the people you love. Put your thoughts and feelings into words, let your actions reflect them, and turn your ideas into memories.

Chapters, Senses, + Legacy

Yesterday I rubbed my son’s back as he threw up out the car door. The seat, the door, and the window got sprayed. I had to pull over immediately, but I’m sure passersby knew what was happening when they saw my pale, skinny, bald little Martian hunched over at the door.

This morning we are in Lake placid watching the sunrise and preparing to climb Phelps mountain, and Mount Marcy the highest mountain in New York State. This is something we have always wanted to do together. We are setting up base camp at Marcy Dam, climbing Phelps today, and then taking the Van Hovenberg trail to Mt. Marcy and back tomorrow. 

This is how we have faced every obstacle in our lives — with blatant fortitude. #FUCANCER

Every day is a new chapter in the book of your life. Don’t be handcuffed to a boring agenda. Don’t fall into line like a sheep and accept a life relegated to monotony.

When you are gone people will not care whether you were a janitor, a doctor, or an attorney. Their memories of you will be etched by their five senses. They will remember what it felt like to touch you, what you smelled like, how are your voice sounded, and what you looked like.

But there is an X factor — How you made them feel will leave behind the most vivid memories.

So write the chapters of your life boldly and focus less on things that no one will even remember when you are gone. No one cares. Everyday you are writing your legacy. Do it with grace and passion.

Sully has been on hold for the past two weeks to begin phase 3 of his chemotherapy treatment because his blood levels have been too low to start.

Chemotherapy kills cancer cells, but it also kills all of the cells even the good ones. As a result it is necessary at different points in treatment to take a break and allow the body to reproduce the good cells and recover before beginning the next phase.

We are hopeful that he will be ready to begin phase 3 next week if his blood levels are sufficient.

His spirit is upbeat and positive but he has had frequent bouts of nausea and his eating has been poor.

His total treatment timeline is 3 years. There will be more chemotherapy, spinal taps, bone marrow biopsies and blood draws ahead, but this is our new norm and no one is complaining.

He was cancer free on his last MRD reading a few weeks ago, and that is the positivity we embrace and hold onto.

Follow us on Instagram for updates from the trek.

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Tackling Cancer 🏈🏈🏈

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A year ago my 10 year old was running touchdowns. Today we're tackling cancer. Can you imagine?

I still find the circumstances stunning, but my guy is doing his thing and we are determined to make this just another series in the playbook of life. 

Sully's spirits are unbroken in spite of the many things that most 10 year olds never have to consider: swallowing a handful of pills twice a day, reporting for chemotherapy sessions almost everyday, having to get a needle of some sort everyday whether it be a finger stick or having his medi-port accessed. Then there are the other things like the frequent stomach aches, loss of muscular strength, constipation, lethargy, easy bruising, and the spinal taps and bone marrow biopsies. The chemotherapy kills all of the cells even some of the good ones, so once in a while he needs to get blood transfusions if his levels drop too low. There are also periods where his immune system gets dangerously low and when that happens we quarantine him for a bit. Right now he is fishing his 2nd stage of his chemotherapy plan and getting ready for the 3rd stage which will be more intense and require a couple hospital stays.

We take everyday as a gift while trying to keep things as normal as possible for him, and while trying to manage our own emotions, finances and responsibilities. I sometimes don't know whether I'm coming or going or what the future holds, but I make sure to find something to be happy about on a daily basis and I share that energy with Sully. 

The combination of COVID-19 and his cancer diagnosis have made this our most challenging year ever, but the support of our friends and family have helped tremendously.

Sully's last MRD reading was negative which is very promising. All we can do is keep at it, enjoy each day, and pray. I know he'll beat this, and although he can't hit or fully participate in football this fall, you can be sure he'll be suiting up and making some practices with his teammates. In the meantime he's getting some blood on today's visit!

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