Experimental Therapy and Compassionate Care Saved Them Both
A decade ago, 1 year-old Layn Burger was in a very different place than he is today. Layn was battling a rare childhood cancer. Thanks to his mom, Tami Rodriguez, and one very brave decision she made as a young, single mother, both their lives are much better because of it!
At 23 years-old, I was the textbook ‘young single mom’ with, unfortunately, a lot going against me. I had grown up around alcoholism and addiction, and it seemed I was heading in the same direction. Had it not been for my baby boy’s cancer diagnosis, I do not know where I’d be now!
Layn’s cancer was a wake-up call like I’ve never experienced before. And, after the initial struggles of getting that news and the trauma that came along with it, the long-shot resolution was not only exactly what his system needed to live, but what I needed to live, as well.
At the age of 21, I found out I was pregnant and nine months later, gave birth to my healthy baby boy. Yes—a healthy baby boy. He was healthy when he was born. As a matter-of-fact, Layn was achieving all of the typical infant milestones. It wasn’t until we approached his first birthday that we began to notice something. He started having fevers and losing his appetite and we had been to the doctor multiple times. Then, just four days before his first birthday, I was told in the emergency room that he had Wilms’ Tumor, a pediatric kidney cancer usually found in children under the age of 5. Huh? My kid? Cancer?
After waiting in the emergency room for what seemed like forever, a doctor came in and said, “Your son has Wilms’ Tumor. You need to go to Penn State Children’s Hospital.” We knew this was serious. We drove to Children’s Hospital immediately that evening. The next day, we talked to the doctors. Then, just two days after our initial experience in the emergency room, Layn was being operated on. They removed a tumor the size of a small football, and his left kidney.
There was a day or two of insanity as we figured out the next steps. Once the next steps were defined and planned—surgery, chemotherapy and radiation—the doctors, nurses and staff told me exactly what to expect. The social workers and Child Life Specialists are really how we made it. They’d come in and find out if there was anything we needed. Just having them explain everything to us and let us know we weren’t alone was so helpful and comforting.
We made it, or so I thought. It was Layn’s last day of chemo and I was so excited. We had a “baby’s last chemo” onesie and we strutted down the hallway thinking we were all done. Later that same day, we received heartbreaking news—the doctors found cancer in his lungs – stage 4 this time, not stage 3. I felt crushed and defeated. They told me the cancer was very aggressive and still growing.
We could either wait for a new treatment to be discovered and hope for the best, OR, as a last effort, Layn could be enrolled in an experimental therapy. This experimental therapy would replace Layn’s stem cells with cord blood from an unrelated donor. This was not a typical treatment for a child with this type of cancer, but there were no other options.
More bad news– the treatment was going to cost more than $230,000 and my insurance wouldn’t pay a dime, since it was experimental. I didn’t know what I was going to do, but I knew that not going through with this treatment was not an option.
Then, the doctors told me that Four Diamonds would cover the cost of this experimental therapeutic option for my son—I couldn’t believe it. Throughout Layn’s treatments, Four Diamonds supported me and my family in so many ways—providing the social workers and Child Life specialists who helped us through this, to covering the medical bills beyond what insurance covered. NOW, Four Diamonds was going to cover the cost of this experimental treatment too? I was so grateful!!
If it weren’t for that experimental study, Layn would not be here today. Every year we celebrate Layn’s birthday in August, and on July 7 we celebrate the day he received his stem cell transplant.
Today we’re just a typical American family. He can do what he wants to do. He inspires me daily– the fact that he was so little and overcame so much and he continues to succeed. It just blows me away that he’s my son.
I had some not-so-good influences in my life at that time and I was able to remove myself from those influences at the Children’s Hospital. That was a godsend. Without all of the doctors, nurses and staff checking in on me and providing resources I needed, I could have been the mom who gave up on my son. They always gave me that time and understanding. They were never rushed. They just wanted me to be able to care for my son.
That’s why I love the Penn State family – everyone is so kind and we just feel the compassion. When Layn was healthy, I missed Penn State. Now, I work for Penn State Medical Group in Elizabethtown. I get to give back and I feel like I’m doing for another family what someone did for me.
Now I want Layn to start telling his own story for Four Diamonds; hoping he can inspire others along the way, as he inspires me every day.
For his part, Layn doesn’t remember much about his cancer treatment. He still returns to the Children’s Hospital for regular checkups. “There are so many nice people there,” he says.
Layn enjoys attending THON™, where he’s an inspiration to Penn State students who work tirelessly to raise money for Four Diamonds to support pediatric cancer care and research at Penn State Children’s Hospital. THON is not Layn’s only affinity to Penn State. “I want to be the Nittany Lion one day—I could do it,” he says. “If that doesn’t work out, I would be a cop or a game maker.”