Father. Coach. Host of Byronic Heroes.
Helping fathers and sons sharpen their edge—with honor, masculinity, and purpose.

Showing posts with label Blog. Show all posts
Showing posts with label Blog. Show all posts

“I don’t need a watch to tell the time. I don’t need the sun to help me shine” -Shawn Mendes 

Sully’s cancer journey started when he was diagnosed with Acute B-Cell Lymphoblastic Leukemia at 10 years old. 

This month he completed his first year of normalcy and is cancer free. 

There are follow ups with doctors, but as of a year ago there is no more chemotherapy, no more sleeping off the poison, no more spinal taps, no more drugs, and no more restrictions. 

In Shawn Mendes words, our life has been defined not by a watch, but by these moments and milestones we never anticipated. 

He is in the process of rebuilding his body and although he doesn’t speak of it, he is also healing the deeper wounds associated with a cancer battle. In a sense we are all returning to a life that is not overwhelmed with medical procedures and overshadowed by fear. 

I will never forget the pit in my chest the day he was diagnosed. Thank you to all of our friends and family for your support over these years. 

I love you Sully and I thank God every single day for your presence, your company, and your strong beautiful soul. You are my hero. You will never walk alone. 



 



 


“At the end of the day people won't remember what you said or did, they will remember how you made them feel.”
― Maya Angelou

I write it as I see it. My exercise in understanding this crazy thing we call life. A simple archive of stories to survive me. 



I was showering today when I heard my 17 year old daughter Milan screaming at the top of her lungs.

"Dad!!!" 

I thought it was because I had the radio turned up, but upon grabbing my towel and getting out she shrieked "Lennox has been hit by a car hurry!" She was crying. 

She had just arrived for a 3 day visit from college in Alabama. We didn't even get a chance to say hello and I was running around my bedroom frantically looking for a pair of pants to put on and run downstairs to see what happened. 

I threw on a pair of jeans and ran outside passing my 11 year old Sully on the front porch who was also crying and looking at our dog Lennox who sat in the driveway. 

I looked back at Sully as I ran over to the dog and told him "calm down it's going to be okay." 

I told Milan the same thing but after I saw the dog I realized I might be bullshitting them both. He sat in the driveway upright. He was alert, but stunned and not moving. They had thrown a towel over him and there was blood everywhere. 

"It's his legs Dad, you can see the bones and they are bleeding badly," said Milan. I was proud of how calm and collected she was, clearly a result of her EMT training in high school. Sully cried harder.

"Okay everyone relax it's going to be okay, we're going to take him to the hospital just calm down," I said.

I ran inside as fast as I could and pulled 5 or 6 beach towels out of the closet. Pots and pans crashed onto the floor that were stored next to them but I left them and ran out the door. I wrapped the towels all around Lennox and then I picked him up and laid him in my back seat. 

I ran upstairs to put a shirt and shoes on and returned to them waiting in the driveway. The towels were quickly soaked in his blood. 

"Stay here. I'll be back I'm going to take him to the hospital, I have to get him there quickly before he loses more blood." 

"You aren't going anywhere without me he's my dog," Milan said. 

I saw the look in her eyes and knew there was zero chance of changing her mind. 

"Get in the back seat and sit next to him then. Sully get in the front seat, let's go," I said to them as I hopped into the car. 

I wasn't even sure where to take him. We pulled out of the driveway and called his vet. They told us not to bring him there, but instead directed us to the veterinary emergency room nearby. I put my hazards on to excuse my excessive speed and got us there safely in less than 10 minutes. 

I parked the car out front and picked up Lennox in the bloody mess of towels and carried him in. The doctors descended upon us immediately and brought us into the operating room where they had me lay him down on the table. 

Sully and Milan stood near me as they tried to keep him from moving. He began moaning in pain. The doctors took off the towels and you could see most of the bones in his rear legs. All the skin was torn away and the blood was still seeping out. I directed Sully to the waiting room.

"You shouldn't be here now. Go sit down out there and I'll be right out," I said to him. 

Tears rolled down Milan's cheeks but her poise was great. I have always had an innate ability to stay calm in the worst of situations and put people at ease. It appeared that trait had rubbed off on Milan over the years because she just stood at the foot of the operating table politely asking questions as if she was one of the doctors. 

The weird thing about veterinary E.R.'s is that they allow you to remain with the pet. Milan stayed beside him the entire time while I went out to console Sully and make trips back and forth between them. 

Sully had calmed down and went through bouts of staring out the window silently followed by more crying. 


Over the course of the next hour and a half we learned that Lennox had multiple fractures in his hind legs, the tissue was torn off, and he had potential damage to his bladder and internal organs. They told us that his needs were beyond the scope of what they could do there and that we would have to take him to a hospital that was more advanced where they could do further tests. 



They told us if he made it he would be in the hospital at least a week and would need multiple reconstructive surgeries adding up to an estimated 20k in medical bills. 

After listening to the doctors I took a breath and went outside. I noticed Sully trying to go back to the dog and I motioned through the window for him to sit back down in the waiting room. 

I went on the side of the building where no one could see me and I cried. Not as much for the dog as for the idea that I would have to explain this to him and see him go through the pain. 

They were inseparable. They were like the boy and his dog in Old Yeller. He was constantly doing stupid things with the dog, laughing at him, having full blown conversations with him, and entertaining himself til no end. The dog slept with him every night. I knew his world was about to cave in, and the kid had been through so much in the past year with his cancer battle. The situation sucked. 



Milan who had just stepped into the house from her plane ride when this happened was still in shock. It was some homecoming for her first trip back I thought to myself. 

I began to look for the silver-lining and realized this whole instance was probably written long before it happened. And that Milan was supposed to be here for this because the universe knew Sully would not get through it without her. That was the best sense I could make of the tragedy. She was the second closest to Lennox, often calling home from college begging me to put him on Facetime. We named him Lennox after the NYC hospital that all 3 kids were born in.



Finally we left the veterinary hospital and the two of us went to pick up my middle son Preston from basketball practice. We pulled up and the door to the gym was open. We were late but there were still kids shooting around. I told Milan to go in and surprise him. He had no idea that she was coming home for a visit, and he had no idea the dog was just ran over. 

The rain poured down as Sully and I watched from the car. She called out to him as she stepped inside the gym, and a few seconds later we saw him walk across to her smiling. They hugged in the frame of the doorway for what seemed like an eternity. That image will stick with me for a long time. 

"Why is he sniffling? Why you sniffling Sully???" Preston asked when he got in the car. 

I smirked because his tone was so abrasive and out-of-context for what we had just been through. 

"Lennox got hit by a car," I said. 

My eyes welled up. Sully burst out crying and Preston sat dumbfounded and blessed us with a few profanities. He is probably the most compassionate and sensitive one of my 3 kids, but he has a shell of armor and rarely shows any emotion when he is hurt except for anger. 

We discussed dinner options on the drive home but unanimously scratched them. No one was hungry. 

About an hour after we were home the doctor called. 

He was gone. Lennox had died from the internal bleeding and injuries. 

I gathered the 3 kids and told them the news. It was a bad scene. Sully's heartbreak and anger reminded me of his emotions on the day I had to tell him he had cancer.

"Why!? Who's going to come to the door when I get home!? Who's going to sleep with me!?" he shouted. 

The deep belly cries continued as Milan tried to console him with some sort of explanation about God which he didn't seem to be buying. 

Milan started crying and then said "I have to go for a walk, I want to call my friends." 

Sully stayed on the sofa sobbing with his face planted in the pillow uttering things I couldn't make out. 

Preston walked in from outside. 

"What were you doing??" I asked. 

"I was washing the blood off the driveway with the hose" he said. 

When I heard him say that it put in perspective how each of them was handling things so differently. Sully was emotional and needed physical affection and love and reassurance. Milan needed space and respect, and Preston needed to feel helpful through his acts of service and also needed some space to process it by physically exerting himself. 

I wanted to force Milan and Preston to stay home. I wanted to hug them and let them cry on my shoulder, but I realized that all 3 of them were dealing with it in different ways.

I needed at that moment to love them each differently in spite of what I felt myself. When you love someone you love them in the way they need to be loved, you don't force your own coping process on them because that's how you think they should handle things.

Everyone handles shit differently when life comes down on you. There is no wrong and right, it's not about age or gender. And to be enlightened and armed with that knowledge is to have the most fulfilling and healthy relationships. 

They left and I stayed with Sully rubbing his back until he calmed down a half hour later. 

I turned on the TV for a distraction, and later in the evening everyone returned to the living room on their own terms. When they were receptive to it I was able to love them the only way I knew how; with affection and words of encouragement. I reminded them that Lennox was an old man and lived a nearly full life. I asked them to focus on the memories and not his absence in the days ahead. I told Sully what a great dog owner he was. 

And I shared something someone had told me earlier in the evening that I thought was so appropriate: 

"Everyone knows on the first day they get a pet, that someday they will have to say goodbye."

Sully has been robbed of so many things over the past year and a half due to his treatment for Leukemia. I am nervous that he will become depressed. He was so close with Lennox, we are going to have to fill the void.

The man who was speeding down the block in the pickup truck and hit him saw us off when we left for the hospital and he returned later in the evening to apologize again. I am glad my kids were able to get that closure and saw that there is still good in humanity. I'm not sure how destiny connected him with the event, but I'm sure there is a lesson learned for him. I can't imagine how he felt standing in my driveway with the kids crying over their bleeding dog. 

On a lighter note; we love everyone in our neighborhood, but coincidentally the only asshole on our block stood on his lawn shaking his head when the dog was hit and the kids said he didn't even come over to offer help before I arrived. The same "Karen" that calls the town on his neighbors that park on the street. He hated the fact that our dog was trained to piss at the curb. Another hollow man. 


 


The room is dark except for the glow of the dimmed sconces on the brick wall over the fireplace, and tiny flames flicker in a mason jar candle on a table nearby. I sit on a sectional sofa with my legs stretched out on the coffee table in front of us. It's quiet. It's after midnight and the light from my macbook glows on my face. Sully my 11 year old has fallen asleep next to me after our movie night together. He lay on his back with his arms stretched out over his head. His hair has finally begun to grow back and gotten just long enough to squirt some gel in. It's been a little over a year since he was diagnosed with B-Cell Lymphoblastic Leukemia. The look on his face and his reaction when I had to tell him he had cancer last year will haunt me forever. 

He is slowly getting back to his old self. He is able to socialize now when his blood levels are up, and he has started exercising a couple times a week. Although he can't go back to football yet as he would like, we are going to create a protector plate for his medi-port and he's going to play soccer for now.

The past couple months have brought up a lot of emotions as all of the memories from a year ago began popping up on my social media feeds. He has completed one year of treatment and has two more years to go. For the past year he has been at the hospital almost everyday for chemotherapy, blood tests, spinal taps, or blood transfusions.

He will need to complete two more years of chemotherapy and testing. The good news is he is cancer free and only has to visit the hospital once or twice a week for the maintenance phase. 
 
After two years if everything goes well he will stop chemotherapy and just have to go for annual tests. It's a long program, but that's the treatment standard for young boys who have Leukemia to minimize the chance of it coming back. 

My daughter graduated high school and I dropped her off at college in Alabama a couple weeks ago. It's just me and the two boys at home now. Once again I am in the middle of changes and transitions.  I find my thoughts and emotions pulled in many different directions, as a dad, as a man, and as a human being trying to figure out the meaning of life. 
 

Sully finally went back for the last two weeks of school and his friends and teachers gave him a warm welcome. It was a long time coming.


Now summer is almost over and he'll be starting middle school in September. 
 
I took him for 6th grade orientation this morning, and although COVID has changed how they are doing things, it was great to see him back with his friends. We went for lunch at the diner afterward and a morning filled with our usual banter and humorous moments. 
 



After lunch we pulled up the list of his school supplies on my phone and we headed to staples.
 
 
After debating which folders were the right ones and searching for a "stylus pen" we moved on to scissors. 
 
Scissors: A dozen different types. 
 

"Get these dad."

Sully handed me a pair of blue scissors for $3. I didn't even look at him as he placed them in my hand, I was still standing there entranced by the array of different scissors on the wall before us. 

"What about these?" I asked. 
 
I handed him a pair of $6 non-stick scissors. 

"Okay" he said. 

We stood there, my eyes still fixed on the wall of scissors. 

"No wait, how about these." 

I handed over a pair of "non-stick TITANIUM" scissors, my eyes still not leaving the rack in front of us. Out of the corner of my eye I could see Sully smirking and looking at me. 
 
"Dad these are 11 inch scissors, the list says we have to get 7 inch scissors."
 
"Let me see that", I said. 
 
"Oh shit you're right. Okay, I guess they're afraid of someone using them as a weapon."
 
He laughed. 
 
I went back to the rack of scissors and over the next 10 minutes I worked my way through all of them, moving shit on and off the racks, opening and closing them, and trying to figure out why one pair was $3 and another was $29. 
 
Finally I grabbed the $21 non-stick titanium forged scissors with LIFETIME WARRANTY.

"We'll get these. Look at these Sully, the Mercedes of scissors!" I said, holding them up and laughing. 

He looked at me and we both started laughing as I was opening and closing them. It was 100 percent a Larry David moment. 

"Wait these blades have a nick in them and they don't close smoothly", I swapped them for a different pair. 

We started to walk away and then I said "Wait! These have pointed tips! The list says the tips have to be rounded!"

We laughed our asses off and finally settled on a middle of the road pair of 7 inch scissors with rounded tips, and agreed that what just went down in aisle 12 of staples was definitely a Curb your Enthusiasm episode. 

#FUCANCER




 


 

According to my health tracker I slept 7 hours Monday night. 1 hour and 28 minutes was "REM sleep", but only 45 minutes of it was "deep sleep" as compared to the 1 hour and 20 minute minimum recommended. I suppose that's why I still felt tired when I woke up at 6:30am. 

It was another chemotherapy day and I went into Sully's room to wake him up. He lay sleeping with the blankets pulled up tightly to his neck, and the window was cracked. An icy breeze blew in. He insists on sleeping with the window open regardless of the temperature outside. Our dog Lennox lay next to him like a human, also with his head on a pillow. 

I kneeled over Sully, gave him a kiss on the cheek and whispered in his ear that it was time to wake up. I told him he needed to get moving so we weren't late. I told him I would grab his towel and that he needed to hop in the shower. After 5 minutes of coaxing he finally got up and made his way half-asleep to the bathroom. Once I heard the water running I went to get ready myself. 

The usual routine ensued, coffee stop on the trip to the hospital, loud music and silly conversations, and him complaining that my driving was making him nauseous. He was on an empty stomach because he was getting another spinal tap this visit. 

The morning progressed as usual. He has a spinal tap every few months to test and ensure there is no cancer in his spinal fluid. They have become routine, but never routine for us. He gets the same nervous look on his face each time they wheel him into the procedure room to sedate him. They allow me to go with him until he falls asleep. I rub his feet the whole time. I tell him I am there and that I won't leave his side until he falls asleep. It makes me sad. 

Once they have him all connected I move up near his head before they administer the anesthesia. I rub his furry head and whisper in his ear reassuring him that everything will be fine and that I'll be there when he wakes up. I don't know what else to say or how to take away his fear. I say mostly the same things every time, simply trying to do my best to quell his anxiety. 

The nurse pushes the syringe and within a few minutes his eyes slowly close and he falls asleep. It gives me an eerie feeling and I wonder if that's how it goes when they do lethal injections. I leave the room the same way each time: with a kiss on his cheek and a lump in my throat. Each time I go back and sit in the empty room. I just sit and stare, and it feels good to just sit there and do absolutely nothing. I don't use my phone, I don't work on the computer, I don't read. On these spinal tap days I spend a good 20 minutes just sitting there becoming one with the moment. 

After a half hour or so they wheel him back into the room. I stand up and help the nurses move him from the stretcher to his own bed. His body is flacid and I prop him up and arrange his limbs in what I think would be a comfortable position. I rub his head for a while, and I Doordash some food because I know he will be starving when he wakes up.

I return to my chair next to his bed and I go back to work on the computer. He wakes up after an hour or so, we chat, and then he goes back to sleep. They start his chemo drugs. He gets 3 drugs today; Methotrexate, Pentamadine, and Vinchristine. It's a lot compared to a regular day.

He wakes up and eats. Time passes as they feed the poisons into him to attack the cancer. 

At one point he starts getting severe cramps. It's not uncommon. Normally he does well with the chemotherapy sessions, only occasionally getting some nausea and fatigue, but today the cramps make him restless and bring tears to his eyes. I was working on the computer and he yells "Dad" to get my attention. I was in the middle of a Zoom call and had to log off. He pointed to a huge pile of vomit on the floor next to the bed. 

His stomach was a mess. Within a few minutes he asked to go to the bathroom. The diarhea poured out of him. We spent the next couple of hours returning to the bathroom a few times. He was miserable and stayed that way for the rest of the day. We carried a puke bucket with us upon our departure, and he fell fast asleep when we got home. 

Over the next 24 hours I pumped him full of water and forced him to eat even when he wasn't hungry. His ass was on fire from the diarhea but nothing a little A&D ointment couldn't fix. Eventually he returned to his normal self. 

He was at my ex-wive's house the next night and I kept tabs with his brother and sister. He was feeling a little better. 

That night there was a peaceful rain. The highlight of my night was going out in the rain to cook on the barbecue grill. The old screen door clapped loudly behind me as I carried the plate of meat out to the patio. The raindrops sizzled as they landed on the lid to the grill. I arranged the steaks and closed it back up. I could hear the light rain hitting the leaves on the trees all around me. I thought of Sully. I looked up to the dark sky and it felt so good to feel the raindrops hitting my face. I enjoyed it and took a little longer returning to the house. 

Later that evening I went back outside to take the garbage to the curb and bring something to the cottage. I took my time again enjoying the darkness, the rain on my skin, and the sounds around me. These still moments are the ones that people overlook and under appreciate. These instances weave our entire lives into brief moments of silence. 


 

 








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. 


 



<

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. ✌️


 


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.


 




 

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.


 

 


 

 

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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