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 custody of 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. I also began noticing something in his eyes that just didn't seem right. They were dark and lazy, but 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 temporarily and I ordered him “blue-light blocking” gaming eyeglasses. I didn't want to eliminate the video games completely because it was the beginning of COVID and there was a big social component to them, but I thought 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 and told my ex-wife that he "didn't have the energy to play anymore". Normally he 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 that evening 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 a cardiac 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 would turn out to be anemic. I never expected what was about to happen. 

When the first blood test came back 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. 

The next morning 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. 

Eventually I was able to calm him down and bring him back to his senses, and to soothe him. His mother had just beat 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 it wasn’t exactly the same, and answer a lot of questions that he had. 

I've conquered a lot in my life. I survived a poor and abusive father, I beat alcoholism and got sober November 16, 1990 at 19 years old, 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 Preston and Milan 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 he cad Leukemia, and they had a million questions for me that I did my best to answer. 

After being up 24 hours straight 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, and some friends. 

Tomorrow Sully 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 am back at the hospital. 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. 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. 

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