Braving bone cancer. An early detection, an energetic recovery.
The Merrells stopped their Independence Day celebration: 2-year-old daughter Amanda had a worrisome bump on her leg. She was taken to Children’s National for a routine X-ray.
The follow-up call from the doctor wasn’t good news. Amanda had bone cancer.
Initially, she was thought to have osteosarcoma, but tests showed it was a much more rare and dangerous cancer: Ewing’s sarcoma. The treatment was grim. Amanda would not only have to endure chemotherapy, but she would need to have her leg amputated.
Amanda’s trips to the hospital are rare today. She’s doing well in school and living like other kids. Her prosthetic leg has never slowed her down. In fact, her family can barely keep up with her.
“I had cancer,” Amanda said. “Now, thanks to Children’s National, I have a really cool robot leg that helps me walk. Everyone in my class wishes they had a robot leg, too!”
A near-fatal accident. Parents lead drive for portable CAT scan device.
Sara Reges was taking her sons for haircuts when her youngest, Charles, saw one of his brothers getting off the bus. He ran across the street to greet him – and was hit by a car.
“It was every parent’s worst nightmare,” Sara said. They were whisked away by a medevac helicopter to Children’s National.
That was the beginning of an arduous journey during which Charles underwent nine CAT scans and remained half-paralyzed for two months. Each time Charles needed a scan, he had to be removed from life-support equipment because the machine was not portable.
“It was so strenuous that he ended up having CPR three times,” Sara said. “Being a nurse, it was something that I made my mission to change.”
Portable CAT scan machines exist, but Children’s National did not have the funds to buy one. So the Regeses worked with friends and supporters to raise enough money to acquire one. Today, Children’s National can bring its portable CAT scan to patients, avoiding the need to disconnect life-support equipment.Charles has made a complete recovery, and the Reges family is eternally grateful.“Children’s National is a gem in our backyard,” Sara said. “Without it, Charles would not likely have survived. They gave us such great care and so much more.”
"I’m the lucky one." Gratitude in the face of a life-threatening disease.
The diagnosis was shocking: Jaiwen had bone cancer. There was no choice where to go next, according to the orthopedist who shared the news with his parents: “You need to get to Children’s National, because that’s the best place for him.”
Jaiwen had surgery and chemotherapy for the affected leg. The required treatment was drastic enough that Jaiwen had to relearn how to walk. His goal was to recover in time to walk on the first day of school – and with hard work, he did just that.
The family says the staff at Children’s were a constant source of comfort and inspiration. “All the nurses and doctors supported me and they encouraged me and they told me that it was okay, and that really brought back a lot of hope,” Jaiwen said.
His mom added, “I will always remember Children’s National as a place that was like a second home to us. The doctors there saved Jaiwen’s life.”
Jaiwen now describes his experience publicly with the intention of raising awareness. “I try to spread my story in hopes that it will encourage others to help other sick children like me. I used to ask ‘Why did this happen to me?’ But now I realize I’m one of the lucky ones.”
Managing leukemia. The difference a supportive environment makes
Kelly Richards had just flown a combat mission over Afghanistan when he got a call from his wife, telling him their daughter, Rylie, had leukemia. As drastic as the news was, the family felt comforted to know that Children’s National would be able to treat the illness and help make sure Rylie could continue doing the things that kids need to do.
Children’s National provides psychosocial services such child life specialists, psychologists, music and art therapists, and teachers – all funded through philanthropy. “They always say that the job of a child is to play, and at Children’s National, she can still fulfill that need,” said Rylie’s mom, Tracie.
Dr. Jeffrey Dome, Chief of Hematology and Oncology, said, “We’ve learned that successful cancer treatment isn’t just about delivering the medications. It’s about making the environment a friendly place where people can feel safe and comfortable during the course of their treatment.”
Added Amanda Thompson, medical director of Patient Support Services, “We have to rely on the support of our donors to be able to keep doing what we’re doing and to be able to support our patients and families. We want our patients not just to survive cancer, but to thrive in spite of it.”