Tag: #cmlsurvivor

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The Results

It had been about a month since my CML diagnosis and almost two weeks since my siblings were blood tested for their DNA markers to see if they would be a match to mine. A six out of six marker match would be the ideal outcome and provide the best situation for success. It felt like forever but Dr. Topolsky said it would take around two weeks for the results.

There was a lot of speculation as to which one of my siblings would be a match, if any of them. It was very possible that none of them would be. This was quite normal as my research into the percentage of success showed that possibility. I read about many bone marrow transplant patients that had to rely on the National Bone Marrow Registry for their donor or have a transplant using their own marrow which was radiated to remove the cells that would cause the CML. This type of transplant was not very effective.

The competitive nature of our family made the wait somewhat interesting. Bets were being thrown out there and odds laid out. My brother Glenn was 14 months younger than me. He had blond hair and blue eyes. I had brown hair and brown eyes. He was a clean freak, honor student and a soccer player. I was kind of a slob, attended school and an Ice hockey player. His odds seemed low. Plus I was much better looking. My sister Donna was six years younger, also had blond hair and blue eyes, also an honor student, a lot like Glenn. So far not looking good. Then there was Lisa. She was twelve years younger than me, an oops baby, lol, but had brown hair and brown eyes. She looked a lot like me, was a good student and although she was much younger than me seemed like the frontrunner. Genetically, it made sense.

So Lisa…Glenn…Donna. Thats where I had it. When the phone finally rang with Dr. T on the line, I hoped that a winner would be revealed. He was very excited and the news was terrific. A perfect six for six match on the DNA! On the first shot we nailed it! Genetics are very interesting we found out. My six for six identical match had blond hair, blue eyes and a different blood type than I. Dr. Topolsky explained to me that our winner, Glenn, was conceived in such a short amount of time after me that it may have played a large part in the result.

Needless to say, Donna and Lisa were disappointed but nevertheless overjoyed by the outcome. I had a match and was again moving forward. The transplant coordinator would be in touch very soon to set up my appointments for the next two weeks and set the date that I would be admitted to begin the transplant. So much to take in and prepare for. As happy as we all were, I know that Glenn was probably the happiest of us all. He would have the chance to save my life.

Next up: When Your Child Has Cancer.

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Finishing Florida and the Call Seals the Deal.

The week in Florida wore on as the reality of the situation sat on my shoulders like the rays of the Orlando sun … Relentless. A few days by the pool just relaxing, conversing with friends and playing with Nick helped the time pass by. We enjoyed dinners out and a few more parks and sights to see, as these diversions helped to pull me away from the darkness.

At night, I entered into an alternate state of despair. With Nick tucked in and sleeping soundly, my attention and my anguish was directed towards another major facet in this fight. As my wife Lori lay beside me I would put my hand on her big belly and try to connect with the little person growing inside. With four more months to go the questions would run on in my head like a broken record. ” Will I ever get to meet my child”? Will they ever get to meet their dad? What would he or she look like? Will I ever get to hold my baby? It just wasn’t my future I was worried about. It was theirs. How would they grow up without me? How could I leave my wife so young to raise the kids on her own? We had to get home and get this show on the road. I needed more answers, more education and more time at home to be able to process this mess.

As we prepared to make our way back home, the call from Dr. Terzian came in. The Bone Marrow Aspiration confirmed the diagnoses. I Had Cancer. I asked him if this was one hundred percent certain as far as the lab testing was concerned. Was there any way that they could be wrong. A Hail Mary question I guess. He told me that I could always get another opinion but he was very certain. I would not have to see him again as he recommended me to a young Oncologist at Hanahmen Hospital in the city named Dr. David Topolsky. He would begin the process of testing myself and my family first as potential donors for a potential Bone Marrow Transplant. Dr. Dave wasn’t playin…as soon as I got home… I needed to be there. No delays.

We thanked the Selvaggios for graciously having us and helping us navigate this crazy week with what should have been a fun filled vacation and get together. Who would have known. The trek back to Pa. was on. Another two days of driving with my eyes focused more on the rear view mirror than on the road ahead of me. Staring at my beautiful baby boy. Staring at my beautiful baby boy.😔

Next: An ultrasound and I am officially a Cancer Patient.

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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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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 Beginning of a long long day.

The twenty five minute ride to Frankford Hospital in Northeast Philadelphia seemed endless. Speculation ran rampant during my ride. How could they screw up my bloodwork? Why did I need to go directly to the hospital? Right away, with hardly an explanation? My wife would soon meet me at the hospital for the appointment.

I was to see a Hematologist/ Oncologist…Dr. Lor Terzian. My first encounter after filling out the normal mound of pre visit paperwork would be the phlebotomist who needed to take endless vials of blood…it seemed. Lori and I were introduced to Dr. Terzian and led into an examination room. The doctor asked me many questions about my extended family, my son, my history and probed my body looking for what, I did not know. We then were led to Dr. Terzians office and asked to relax until he returned.

Needless to say I was anxious and terrified at the same time. What was going on? Upon Dr. Terzians return, he sat down and said ” There is no easy way to tell you this…you have Leukemia. Specifically CML. Chronogenic Mylogenous Leukemia.” The new bloodwork reaffirmed Dr. Cieckos suspicions that there was definitely an issue. There most certainly was.

The doctor followed up his diagnosis with the fact that conventionally and with current therapies, I may only have one or two years to live. Possibly longer with a very dangerous operation called a bone marrow transplant provided a genetic match could be found to be able to do the transplant. His demeanor was somewhat somber as we asked him a few questions about a cancer diagnosis of CML. I needed so much information at this point. He asked me if I would allow him to perform a bone marrow aspiration. This was needed to evaluate my situation further. We would move forward and adjourn to another exam room.

Dr Terzian then performed the bone marrow aspiration. This extremely painful test is done to extract and assess bone marrow from an inner portion of your hip bone. After the procedure, I was bandaged up, felt like I was hit by a baseball bat and told that the results would take about ten days. The office would be in touch with me soon. Dr. Terzian gave me a drug called Hydroxyuria to be taken daily for 2 weeks, wished me well and told me to try to enjoy my vacation in Disneyland…. as best as possible.

I walked Lori to her car…hugged her and told her we would be OK. We would meet back at our house after I took a ride to my parents house. I went back to my car, watched my wife drive away…then broke down and cried.

It was 10:30 am. The day was just beginning. There was a long way to go…starting with hugging my son and not letting go…ever.

Next up: Breaking it to the family and driving to Richmond, Va.