Tag: #cmlstory

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Never Never Quit

The conversation at Aunt Michele’s was solemn but informative. Well as informative as we could be at the time and it wasn’t very much. Nick was finally asleep and we spoke about my pending situation into the night until I had to excuse myself. I was mentally and physically exhausted. It was a long trip. I needed to sleep. Lori and Michele were friends for years and years. Best friends from the Bronx. They would catch up for a while and I’m sure Lor needed some time alone without me to talk about how she was feeling. Old friends are good for that.

We got an early start. A quick breakfast and on our way to Orlando. About a 30 minute ride and there it was! Disney World! Nick was so excited! I had never been there either so we were set to go. I kept my best smile face on as best as I could as we rode the rides and went to the attractions and ate fun food. And then…The Lion King Show. Nick loved the Lion King. It was great. A phenomenal show and Nick was loving it! I was holding him up in front of me so he could see better. Then it happened. The scene where Simba watches his father Mustafa die in the stampede while saving him in the last second. It tore me apart. Not knowing if I would be around for him, to save him, to be there for whatever he would need. How could that happen? Only one or two years to live? This wasn’t real was it? Just a baby watching your father die? I pressed my nose to the back of Nicks neck. I smelled his hair, his sweat, his beautiful baby soft skin. And I just kept breathing it in. He didn’t see the tears flowing down my cheeks. The way I was shaking and grabbing him so tight. It was traumatic in the moment for me and I never ever forgot that smell. That incomprehensible feeling of guilt that I would deprive him of a father at such a young age. I had to get out of there. Thank God it was almost over. I held on tight and just kept it together. No way I was leaving my boy. Not now, not ever.

Nick never realized the trauma I was experiencing behind him. He was too young to grasp the situation and he wouldn’t know anything about my battle for a long time. As the day wore down, of course we had to stop in the gift shop. Mickey T’s and Disney Collectibles and of course whatever Nick wanted. As I wandered around the shop waiting for Lori to finish up I noticed a quartz rock that was inscribed with what would stick with me as my mantra for 24 years….”Never Never Quit” it said. This rock would follow me every step of my way. It was gospel. It was true. I would ” Never Never Quit” …that was for sure.

Next up: My wife was 5 months pregnant.

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The Next Leg.

I was pretty tired the next morning. My right hip was aching from the Bone Marrow Aspiration that skewed me deep into my hip bone. It was not a pleasant experience. The pain when the huge needle pierces the bone and the moment the Marrow begins to be exracted by the huge syringe is awful. I grabbed the table with my fingers at the top and my toes at the bottom and held on for dear life. I’m sure others who experienced a bone marrow aspiration can fill you in. This was my first. After 6 more years I think the count topped out at more than twenty five procedures. A real “Pain in the Ass”! When I got home I took a few ibuprofin and my new drug Hydroxeurea. This drug would help reduce my CBC- White cell count, currently at 55k. Normal is 6k to 10 k. With CML Leukemia, your white cell count uncontrollablly grows into the millions rendering your immune system unable to fight infection. The multitudes of new white cells are just too immature to help you survive.

Lori, Nick and I packed up the car to finish our journey. A longer leg from Richmond to Lake Mary Florida where Aunt Michele was waiting to greet our sullen crew. Another rough trip. Tears in my eyes, trying to keep Nick in the dark and make him laugh. He had no clue. Two and a half years old, so smart,so cute, so happy. He was my world. We’re gonna have a great week for him. And hopefully, Lori and I. I figure that I’ll give this predicament a few days to sink in and then I’ll need to get over it. The battle will begin soon and there will be no way that I’m losing it! We’re here! Hi Aunt Michele and Uncle Ed! Let’s do this Disney vaca. We’re ready y’all!

Next up: Mickey and the Lion King.

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Breaking the news

Lori went back to her office to wrap up some office issues she had left to handle before our departure to sunny Florida. I couldn’t imagine what state of mind she was in after she left the hospital. My job now was to break this fabulous news to my parents and family. It was about a half hour drive to my their home in Fort Washington, PA. This setback would, of course, delay our departure but this news was too important to tell them over the phone. This development was going to rock their world in a terrible way. We have such a great, loving family and although no family is perfect…we were pretty tight. This news would test this to the limit.

I pulled in the driveway and hesitantly exited my car and walked in the door. They were waiting for me to arrive, no idea why, since my call to them was very vague. “I have Leukemia”, I told them. As I began to explain the diagnosis and treatment options, the pain I could see in their faces was causing me to cry and they began also as the reality of the situation sank in. This was just unbelievable. I had a great business, a wonderful wife, beautiful son and now only four months until the birth our second child. Why me? Never smoked, never drank, never did drugs Just bought a new house. What the F**#k?? Why??

We cried, we hugged, we spoke positive thoughts and we vowed to do everything in our power to win this unknown battle that I was about to face. We all were about to face. Back in the car, as I pulled away, my focus needed to center on getting on the road to Richmond, VA. This was our first stopover on the way to Disney. A seven hour ride that would turn out to be the hardest ride of my life. What was supposed to be such a joyous occasion today, became a vacation that could literally turn out to be the last ever with my family.

The car was loaded…the gas tank full….the emotions were intense and with complete innocence Nick said let’s go dad! The next seven hours I drove down I95 South with tears streaming down my face. The whole time staring in the rearview mirror at my beautiful baby boy. I was contemplating the worst thing I could ever imagine. Not seeing my kids grow up. Not being there for them …as babies…as little boys.. as teenagers and young men. What I would miss. What they would miss. My wife tried to soothe me and talk positively. As worried as I knew she was, she tried her best to calm me down.

We made it to the Fairfield Inn around seven and just dropped on the bed. Nick was out quickly. I never slept, I couldn’t. My mind was racing and I couldn’t take my eyes off of Nick and Lori as they slept. How would I protect them if I wasn’t here anymore. It was 11 pm. The end of a very, very, long day.

Next Up: The Next Leg

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The Phone Call

May, 23rd 1996

Preparations for our trip were going well. The car was packed the night before and the excitement was evident as it was hard to fall asleep that night. Our first family vacation together, we couldnt wait to get going. Nick was going to see Mickey Mouse for the first time and my beautiful wife Lori would be making the trip 5 months pregnant with our second child tagging along for the ride. We decided to be surprised again, boy or girl, like when Nick was born, so no name yet for baby number two. Great things were happening for us! Departure time was approximately 11 am and we were set to go!

The next morning as we were making our final preparations for our departure, the phone rang. Quite early though, around 8 am. My wife answered the phone and told me that it was Dr. Ciecko. He needed to speak with me. Hmm. Mr. Keenan, he said with his quiet voice, we would like for you to come in this morning to Aria hospital to recheck your bloodwork. That there were some inconsistencies in the blood sample and they wanted to repeat them. Of course, I asked if we could wait until we returned from our trip. We were ready to leave shortly and it would be inconvenient to go there at this time. Sternly and direct Dr. Ciecko told me that the appointment was already set for nine am and I needed to be there. This was very disconcerting and needless to say very upsetting. Lori and I asked our neighbors to watch Nick for us since she already had plans to stop by her work for a couple minutes and I needed to head to the hospital. What could be so urgent? Something is not good, I thought. My mind was going a mile a minute. This day was not be starting out the way we thought it would be. Lori would meet me at Frankford Torresdale Hospital.