Nick, Diffuse Large B-Cell Lymphoma Survivor
I will begin my story when I was 28-years-old – it’s the age when I found out my life was more unique than I could have ever imagined. One day, I was having coffee with my mother and she began asking me when my wife and I would give her a grandchild. I expressed to her that it hadn’t been easy for us, and then the conversation moved into a discussion of the various methods of conceiving children.
I will be honest, I was being a jerk – it was when I told her that I would prefer adopting a child over us using a sperm donor that she responded with, “what if I was to tell you, that is how you and your sister are here today?” I paused and felt as if my entire life up to that very moment flashed before my eyes. I could not believe what I had just heard, and I was in complete shock.
As I came back to reality and looked across the table at my mom, she had a face of relief and shame all piled into one expression. I had to ask her to repeat what she had just said, to be sure I was hearing her correctly, and she couldn’t without crying. We walked back to her office and I hugged her goodbye as I always did, but this time she held on so tight as though she had broken the man she worked so hard to create.
I left her without saying much, and as I met the door to go outside, I looked back and she stood motionless staring at me as though she feared she would never see me the same again. There was nothing I could do for either of us; I was powerless. I walked back to my truck, which seemed like the longest walk of my life, and as soon as I got into my car, I lost all grip on my emotions. I didn’t want to turn the ignition, because I didn’t know where I was going to go from that moment forward, I was lost.
I immediately went home to tell my wife Rachel, what happened – I knew I wouldn’t be able to mask what had occurred while having coffee with my mom earlier that day. I was terrified to tell her because I felt that whoever found out would view my family as being weird, or not normal.
However, once my wife had time to process the news, she said that it made her love me even more, knowing that my mom and dad worked so hard to bring me into her life. Honestly, at that moment, it started to make sense.
Fast forward a few years later when I was 31-years-old. My wife and I were still struggling to start a family and little did we know, we were about to face the obstacle of securing my life in our family’s future. I started to have severe health issues – I was in liver failure, kidney failure, had a feeding tube strapped to my face, experienced significant weight loss (55 lbs. to be exact), I was in immense pain, both physical and emotional, and was anything but myself.
I was diagnosed with diffuse large B-cell lymphoma (DLBCL) and I was told that I needed to start treatment immediately. Before beginning my treatment, my doctors asked me if my wife and I were planning on trying to have a baby because the treatment regimen they wanted to put me on could cause infertility. With only minutes to spare – due to the distance of the fertility clinic from where I was hospitalized – we took a chance on having a future as a family someday. I couldn’t have done any of this without the unconditional support of my wife Rachel, who carried us both when I was unable to stand on my own.
“The thought of cancer and the ever-looming possibility of death didn’t exist because I knew that we still might have a chance to become parents. It was exactly what we needed to hear in order to get through that tough first night of chemo.”
Later that same night I received my first round of chemotherapy, RCHOP – and three hours into my treatment we got a call from our fertility doctor who told us she would be able to help us get pregnant from what she had received from us earlier that day. I never cry, but at that moment I did. The thought of cancer and the ever-looming possibility of death didn’t exist because I knew that we still might have a chance to become parents. It was exactly what we needed to hear in order to get through that tough first night of chemo.
Following that first night of chemotherapy, the journey didn’t get much easier. I endured two years of treatments ranging from chemotherapy, immunotherapy, autologous stem-cell transplant, more chemotherapy, and various failed clinical trials.
After my autologous stem-cell transplant had failed and I relapsed in less than 100 days, my doctors began prepping me to undergo an allogeneic stem-cell transplant. This treatment relied on me finding a donor who is a 10/10 genetic match and we were also told that it came along with various long-term and short-term side effects. Shortly after making that a plan to have an allogeneic transplant, we began our search for a stem cell donor.
At first, we had no luck and no matches. Until un-expectantly, one person came into my life and became my “Hail Mary” donor match – and my half-brother.
After my mom told me I was donor-conceived I began connecting with several of my half-siblings. I ended up reaching out to 10 half-siblings, who were by my side the whole time I was going through my journey with cancer.
Just weeks prior to finding out that I had relapsed I connected with one of those siblings, a half-brother, who happened to be a healthcare professional working at the same institution where I was being treated. With little knowledge of one another or any real connection aside from sharing DNA we would quickly create an unbreakable bond as he was the match that could save my life someday.
At the same time, an additional treatment option came into the equation called CAR T-cell therapy. It was a treatment that we didn’t know a lot about and that was still in the clinical trial phase. We didn’t know if I would qualify for it and were nervous about taking a risk on such a new therapy.
“I decided to adopt the mindset of being an “astronaut.” Like an astronaut, I had an obligation to my fellow man to discover the unknown in hopes of finding something that would save not just my life, but also the lives of the patients who would come after me.”
Faced with the difficult decision of deciding between opting for an allogeneic stem cell transplant or CAR T therapy, I decided to adopt the mindset of being an “astronaut.” Like an astronaut, I had an obligation to my fellow man to discover the unknown in hopes of finding something that would save not just my life, but also the lives of the patients who would come after me. Like an astronaut, I didn’t know if being launched into space would make me a spectacle of fireworks in the sky, or perhaps get me to my destination with no way to return home. Or would I have the rare opportunity to complete my mission and get home safe, delivering something that would drive us all forward to a better life?
Ultimately, I made the decision to receive CAR T-cell therapy and viewed it as a job I wanted nothing more than to do well so that all who followed would have a better chance at life as a result. This was especially true because I was the fifth person in the world to be treated with this type of CAR T Cell therapy.
In the month’s leading up to the clinical trial, not knowing what my fate would be, my wife and I decided to live for today and take the next steps toward becoming parents – knowing that there was a sad possibility that I would not get to see the birth of my child. Then, the day had come to begin my CAR T cell therapy – I spent seven days inpatient, and then had seven days of outpatient observation for any delayed side effects and data recording.
Shockingly the only side effect I experienced was minor vertigo and it all seemed too good to be true. Three weeks after receiving my treatment, I was told that it was a success and that I was clear of any disease.
I was shocked and overcome with immense joy – and shortly after my wife and I welcomed our daughter Julia into the world. I was able to make it through this tough journey because of her, and the promise of a family in the future. People always want to know, “How should I interact with someone I care about who has cancer?” I think the answer’s easy: give them a future. Give them something to look forward to. Plan things with them, because we all need a future to survive for.