Meet Our Young Heroes

“Do your best! Don't give up! Be loved, and love back!” This is what LJ says to encourage kids with sickle cell disease — kids like him. LJ is an advocate for others with the condition (also called sickle cell anemia), fighting to endure the physical, emotional, and mental pain of this disease.

LJ was diagnosed with sickle cell disease as a baby. His mother, Ashley, saw initial symptoms just before his first birthday. He had pain in his abdomen, constantly cried, was stressed, and had a hard time breathing. LJ began treatments at several hospitals and centers, including Nemours/Alfred I. duPont Hospital for Children.

Now, at just 6 years old, LJ is serving his community as a Young Heroes ambassador for the Nemours Center for Cancer and Blood Disorders.  Read LJ's full story.

Ben Barry was diagnosed with Liver Cancer (Hepatoblastoma) in November, 2018 at 5.5 months old.  Hepatoblastoma is a very rare cancer. It’s a solid tumor that starts in the liver. It usually affects children less than 3 to 4 years of age. 

Ben’s family remembers waking-up early on that unforgettable Saturday morning and playing with Ben on their bed. Something about the way his chubby baby belly was protruding, while they were tickling him, looked slightly different than normal. One side of his belly felt harder than the other, almost like a lump under his right rib cage.  They decided to take him to the AI DuPont ER to get checked, though they truly thought they would be laughed at for bringing in their smiling baby.  Unfortunately, that trip to the ER was warranted, and this same day Ben was diagnosed with cancer. The tumor was classified as stage 3—it was not metastatic, but the location and large size made it too dangerous for surgical removal. 

Ben was started on a tough chemotherapy regimen under the guidance of Dr. Renee Gresh. The hope was that the chemotherapy would shrink the tumor enough to be operable.  Despite a long stay at the hospital and some scary trips to the PICU, the chemotherapy was incredibly successful.  The tumor size shrank by half, and made it possible for Ben to have lifesaving liver resection surgery by Dr. Stephen Dunn. 

The liver is an amazing organ.  While the cancer, and half of Ben’s liver, was surgically removed, the healthy remaining liver was able to regenerate completely to a fully functioning healthy liver. After surgery, Ben‘s treatment consisted of more chemotherapy to destroy any remaining invisible cancer cells.  Chemotherapy was tough on Ben, and the Barry family spent nearly one hundred nights in the hospital throughout Ben’s treatment.  Ben required many blood and platelet transfusions, and he dealt with a lot of pain—necessitating strong pain medications and nutrition by IV.  

Weight loss was a real concern.  Ben dropped from being in the 80% weight range for his age at diagnosis, to falling completely off the growth charts.  The chemotherapy caused painful sores in his mouth and nausea, making it very hard to keep down anything.  Despite many setbacks, amazingly Ben continued nursing throughout his treatment! 

Now Ben is two—and a healthy, happy and active toddler.  He’s a daredevil that loves to climb and jump.  Ben loves singing and playing with balls, trucks and dinosaurs, and his favorite color is purple (just ask him!).  Ben will continue to be monitored regularly through blood work. The Barry family feels incredibly fortunate for their son’s health despite the frightening diagnosis.  They see a brighter future ahead for pediatric oncology—more individualized and less harmful cancer treatments.  They especially long for the day when all children with cancer are survivors.

When I was diagnosed with T-cell leukemia, I was very far along. As a sophomore in college during finals week I had not realized how lethargic I was, as most of my peers also seemed pretty tired around that time and I had also had an ear infection. The only reason I got a blood test in first place was I wanted to get an extension on one of my finals because I said my “ear infection” was making me tired. My college said that in order to have an extension on an exam for a medical reason I had to see a doctor first. At the appointment, the doctor asked me the usual rounds of questions, but when she asked “do you have any rashes?” I said “I do have these red dots all over my body, but I think it’s fine.” One of the side effects I got was petechiae which had started about a month and a half before this day. I saw the fear in my doctor's eyes when she saw how the red dots covered nearly my entire body. She immediately ordered the blood test that day and the next morning at 10 am is when I heard the news. I called both my parents to have the doctor tell them and within about 10 minutes after that, they were in contact with oncologists at Nemours. We had a family friend who had gone there for cancer treatment as a child and was able to get us in contact with people who could help us.

Even though I was 20 at the time, my family and I learned about being a young adult cancer patient (AYA) and that Nemours treats AYA cancer patients. Studies have shown that there is a higher chance of survival of cancer patients between the ages of 18 and 39 if they go to a children’s hospital for treatment. Nemours was able to get me approved as an adult patient, set up a room for me to stay in, and got me a primary oncologist who specialized in AYA cancer patients, all within less than 12 hours. Having been in such a critical condition, time was essential and Nemours did so much work and helped save my life. Even after treatment started, there were many rough patches (as tends to happen with chemotherapy) but the incredible staff was always there for me. Even though I was diagnosed with leukemia, I still feel blessed that I am able to have such great treatment at Nemours.