While sitting on a park bench in the heart of Chicago’s medical district on an unseasonably warm January day, I was overcome by how big and overwhelming this city seemed to me. The United Center was to the front of me, and the skyscrapers were towering over miles of urban infrastructure to the right. I was raised in a small town in Nebraska and transplanted to suburban South Florida almost 25 years ago, so the weather and scenery of Chicago are foreign to me.
Growing up, big-city life seemed both exotic and exciting but also scary. After moving to Florida in high school and starting a family at a young age, traveling anywhere was not a priority as a young mother.
Then in 2007, travel became an impossibility when my oldest son, Chansen, at age 6, was diagnosed with leukemia. It was a devastating diagnosis. Dealing with it was supposed to last only three years but ended up lasting seven years in total because he relapsed at 11. It wasn’t until 2014 that Chansen had his last treatment for leukemia. It was a difficult journey, but as the years passed, it became part of the past.
Our family rebuilt and moved forward. My son graduated high school in 2019 with top honors and went to college. We managed the challenges of 2020 better than many, and we emerged from the pandemic with optimism and new wisdom, ready to go forward into the future. Cancer was but a whisper in our past lying in the shadows and, ultimately, a victory story.
Then in May 2021, out of the shadows our greatest fear arose. A routine ultrasound found a 7-centimeter tumor on my son’s liver. What would follow in the days and weeks after was a spiral of heartbreak, worry and desperation. The tumor was not only found to be malignant, but it was also an unexpected variant of an already ultrarare cancer called fibrolamellar carcinoma, and it was incurable.
I had thought the worst days of my life had occurred when I was told my young child had leukemia and then later again when it came back. How wrong I was. In each leukemia case, I was told the odds strongly favored his going into remission, and there was a precise treatment plan to get him there. This time, there seemed to be nothing. No cure, no treatment plan, no clear answers — nothing but confusion and condolences.
Having no experience with this particular cancer, his local medical team referred us to Moffitt Cancer Center in Tampa, Florida, in hopes that the staff members there may have an answer. They did have an answer, but I found it profoundly unacceptable. They told us that the only possible cure would be surgery to remove his tumors but that he was not eligible because it was far too advanced. They offered to give him treatment to prolong his life by a few months. Those words hit me hard, and I refused to accept them. I felt there had to be a better way, so I started reading medical journals and turned to social media.
If fighting leukemia in my son taught me anything, it was that mothers of children with cancer are vigilant and resourceful. I was right, and via a moms’ support group on Facebook, I learned that in the heart of Chicago was a medical team that was vigilant too. A medical team at Rush University Medical Center was doing groundbreaking work on this disease. Through collaboration, incredible skill and compassion, these professionals were extending the lives of dozens of patients who were fighting my son’s ultrarare cancer. Our local medical team collaborated with them, and Chansen started treatment led by pediatric oncologist Dr. Paul Kent.
In November 2021, my husband, son and I flew to Chicago so Chansen could have the first set of tumors removed by Rush’s incredibly skilled surgeon, Dr. Eric Schadde.
We have returned twice, once for another surgery performed by Schadde and, this month, for a new treatment with one of Rush’s most talented interventional radiologists, Dr. Jordan cup. These doctors’ spirit and willingness to trailblaze a path to survival have left me in awe.
However, I had not related it to the city until I took the time on our second trip to have a mini-vacation with my family in which I learned the history of Chicago and experienced the spirit of Chicagoans. I discovered that not only does this city harbor some of the most innovative and impressive museums, science facilities and architecture, but also the city is a place of incredible resilience, rebuilding, and growing over and over again.
It seemed almost poetic to me to learn during an architectural cruise how the city rebuilt itself on top of the rubble of fires. Building from the ash of circumstance hath been a hallmark of my family’s life. It seems nothing short of fate to me now that the city that is saving my son’s life is Chicago, for the landscape may be foreign, but the heart of this great city is now part of my own.
Destiny Haggett is a freelance writer, novelist, former model, advocate for pediatric cancer research funding and public speaker who runs the Wynmoor Center for the Performing Arts in Coconut Creek, Florida.
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