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During a hiking trip in Wisconsin at age five, Sam Tinaglia experienced trouble with breathing and exhaustion in his legs. A week later during his five-year-old routine checkup and after rounds of further testing, Sam was diagnosed with Acute Lymphoblastic Leukemia (ALL). After nearly a decade of enduring multiple relapses, he was able to enroll in the CAR T-cell therapy clinical trial at the Children’s Hospital of Philadelphia (CHOP) and became the first pediatric patient in Illinois to receive CAR T-cell therapy. Today, Sam celebrates almost 10 years of remission!

In his own words, Sam shares the story of his diagnosis, relapses, the journey to advanced therapy and what his life looks like today.

*This story has been updated July 2025

 

A week before I turned five years old, my family and I went on a weekend cabin trip to Wisconsin. During a hike, I had trouble breathing and had pain in my legs. After the trip and during my five-year-old checkup, the doctor noticed something was off and sent me for further testing. That’s when my family and I found out I was diagnosed with Acute Lymphoblastic Leukemia.

I started chemotherapy soon after, which lasted for three years. I was so young that most of the medical terms and drugs were a blur to me, but my mom could still list all of them. During that time, we tried to keep life as normal as possible outside the hospital. I went to school when I could, played basketball in my driveway, and just tried to be a normal kid.

When I was nine years old, the cancer came back for the second time. We did another full three years of chemotherapy but with stronger drugs. I remember being in third grade, showing up to school with a bald head, and having to leave halfway through the year. Honestly, at the time, I was just happy I didn’t have to do math multiplication tables! But of course, it was hard. My family made the decision to keep fighting with chemo again, and we stayed hopeful.

After finishing that second round of treatment, we were optimistic. However, when I was 12, cancer returned again, but this time in my central nervous system. We were at our cabin again, and I started feeling really out of it after a nap and developed a facial droop.

I lost my hearing in my right ear as well, and after a visit to the hospital, doctors discovered a relapse in my spinal fluid. I ended up with significant brain swelling because the dead cancer cells got trapped and created a blockage as they tried to exit my body. Because of this brain injury, I had to spend five weeks at the Rehabilitation Institute of Chicago and learned how to walk, talk, and even count to ten again. That is something I will never forget.

Once I was in stable condition, I was able to have a bone marrow transplant, and my sister was my donor. She was a perfect 10-out-of-10 match! We are very genetically similar, which turned out to be a huge blessing. The transplant worked and we thought we were finally in the clear.

When I was 15, unexpectedly for everyone, my cancer returned again. Thankfully, it hadn’t returned to my spinal fluid, which meant my sister’s cells were working and they still are today. We gave chemo another try. When I turned 16, the cancer returned for a fifth time.

We had done a bone marrow transplant and multiple years of chemo at this point. Nothing was working.

My doctor at the University of Chicago told us about a new treatment being tested in Philadelphia, which was called CAR T-cell therapy. We learned about a new trial that I qualified for, at the Children’s Hospital of Philadelphia, and were introduced to Dr. Grupp and the team there.

Right around Thanksgiving in 2015, I traveled to Philadelphia and became the first child from Illinois to undergo CAR T-cell therapy. I don’t remember my exact patient number in the trial, but I was one of the earliest pediatric participants with central nervous system involvement.

The process was explained to me that doctors would take my own T-cells out of my body, re-engineer them with a cancer-fighting agent, and then reintroduce them into my body to fight the leukemia.

The treatment has worked to this day and it continues to reproduce itself to actually be a living drug!

It has now been nearly ten years since my CAR T-cell therapy, and I am incredibly thankful for this miraculous new treatment! The biggest challenge though, for anyone who’s received CAR T-cell therapy, is that we don’t have our own B-cells anymore, so I need to receive immunoglobulin infusions every few weeks to stay protected from illnesses. But compared to fighting cancer again, this is very manageable.

CAR T-cell therapy was so different from anything I had done before – it was much shorter and less intense than chemo or a bone marrow transplant. You don’t have to lose your hair. You don’t have the same long-term side effects, and unlike the bone marrow transplant, I didn’t need to be in isolation for 100 days. It was life-changing!

After treatment, I was finally able to start living my life again, without constantly being pulled back into the hospital. I was able to go away to college, and I graduated from the University of Illinois in Urbana-Champaign with a 3.99 GPA and later earned my master’s degree in Recreation, Sport and Tourism during COVID-19. Today, I work full-time at Paragon Sports Marketing, where I help manage accounts for brands like Gatorade and Muscle Milk, help send products to universities, and organize events all around the country. I love my job. It combines my passion for sports with the opportunity to work with people every day and to travel, which I really enjoy.

Outside of work, I’m a huge Chicago sports fan. You’ll usually find me watching the Bears, Cubs, or Blackhawks, going out to bars with my friends in the Lincoln Park neighborhood of Chicago, or planning a trip to a new stadium or city.

I also volunteer with Make-A-Wish Illinois, helping at their annual Wish Ball and even rappelling down Chicago high-rises to raise money. Recently, I have been mentoring youth at a nonprofit in Chicago called Breakthrough, teaching middle and high school kids about emotional health, conflict resolution, and supporting them in navigating their present challenges and planning for their futures. It’s all about connecting with people and giving back, that’s what brings me the most joy.

I try not to let cancer define me. My family and I always treated it like a job. When I had to be at the hospital, I showed up and got it done. Whether it was chemo, radiation, spinal taps, or blood draws at 5:00 am, even if it was painful, it needed to be done. Once I was home, I was back to being a kid, playing basketball, baseball, going to school, and hanging out with my friends.

I didn’t want people to think of me as “the kid with cancer.” I wanted them to see me as Sam, the sports-loving, adventure-chasing guy, who just happened to beat cancer.

When I think about the researchers and scientists who helped make CAR T-cell therapy possible, I want them to know how grateful I am. Even if their role was just one small piece of the larger puzzle, it meant everything to me and my family. What they are doing changes lives!

To the people in positions of influence, the policymakers and leaders who help decide what gets approved and funded, I say this: Keep pushing. Keep investing in innovation. CAR T-cell therapy was once an experiment – now it is saving lives. If we stop testing new treatments, we stop moving forward. Families need hope, and options like CAR T-cell therapy give them that.

For families currently in the fight, support comes in many forms. For us, it was the people who brought meals when we were overwhelmed. The relatives and friends who helped with my family and siblings. A list of trusted babysitters or even a quick visit from friends to my hospital room. These small gestures meant the world.

I have always attended the Emily Whitehead Foundation Believe Ball, too. One of my favorite parts of staying involved is meeting the scientists, the other survivors, and the people behind the scenes who made this therapy possible. I may not talk about cancer every day, but I’ll never stop being grateful.

Ten years ago, we didn’t think I had any options left. Today, I’m living life to the fullest, and my future is just getting started!

We receive messages from patients and families around the world with experiences similar to Sam. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access advanced therapies.

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