When their son Charlie was 16 months old, Jason and Beth noticed a rash on his skin that signaled the start of Charlie’s battle with leukemia. Thanks to the treatment plan they helped develop with his doctors at Cincinnati Children’s, Charlie is a happy, healthy kindergartner whose cancer is in remission.
Everything happened so fast. Five days after the birth of Charlie’s sister, Maddie, Jason and Beth Ehrhardt noticed a rash developing on Charlie’s skin. They took Charlie to his pediatrician, who drew blood samples and immediately referred them to Cincinnati Children’s. The Ehrhardts found themselves meeting with oncologists later that night.
“After reviewing the blood samples, the oncologist told us, ‘your child has leukemia,’” says Jason. “That was a rough night.”
A Roadmap for Charlie
The blood tests showed Charlie had a type of leukemia common for children with Down syndrome called acute myeloid leukemia (AML).
“Most people do not know that children with Down syndrome have a higher risk of developing leukemia,” says Oncology Division Director, John Perentesis, MD. “However, the good news is children with Down syndrome respond to treatment better than those without Down syndrome. The treatment is typically shorter and more effective.”
Cincinnati Children’s is a leading center for research to understand why children with Down syndrome suffer from higher rates of leukemia. At the international American Society of Hematology Meeting in December 2010, Jennifer Pope, MD presented her work from the Perentesis laboratory indicating that the increased incidents of leukemia in children with Down syndrome may be related to impaired ability to neutralize oxidants or other carcinogens. This work is helping Cincinnati Children’s develop better treatments and also new regimens for leukemia prevention.
With this knowledge, the expert staff at Cincinnati Children’s talked with the Ehrhardts about the different treatment options as well as the risks and benefits of each. After discussing a few alternatives, the Ehrhardts and Charlie’s doctors decided as a team on chemotherapy as the best treatment for Charlie.
The next day, Charlie’s care team sat down with the Ehrhardts to review a roadmap for Charlie’s treatment. The plan outlined the treatment information and schedule.
“We are planners. We wanted to know how long it would take and what kind of chemotherapy he would be getting,” says Beth.
“They were upfront and honest with us from the very beginning. They told us what to expect. In fact, everything went exactly how they said it would – to the T,” adds Jason.
Charlie underwent eight rounds of chemotherapy; each dose lasted four days. After the first six rounds of chemotherapy, the Ehrhardts stayed at the hospital for an additional three and half weeks so Charlie’s care team could monitor Charlie’s cell count and protect him while his immune system recovered. Then Charlie went home for an additional two weeks before starting the next round. Following his final two doses, Charlie was monitored and recovered at his home.
“Those first few weeks, we had a million questions,” says Jason. “But the doctors and nurses at Cincinnati Children’s were great about answering every one of them.”
After Charlie’s first round of chemotherapy, his leukemia was in remission. But he needed to continue the treatment to give him the best chance of avoiding a relapse.
“Charlie got sick; he had fevers; and we had long stays; but we knew once his cancer was in remission it was looking good,” says Beth.
The Ehrhardts are grateful they were able to stay involved in Charlie’s care, learning about each phase of the treatment as Charlie was going through it.
“They included us on rounds every day,” says Jason. “We discussed as a team what needed to happen in order to go home.”
Full Speed Ahead
Four years later with his cancer still in remission, Charlie runs off the bus to greet his sister and parents with open arms. He is eager to shake your hand when he first meets you.
Inside he is excited to play with his trucks and stuffed animals. He is reluctant to share his pretzels with his younger sister. He loves holding out his hands and falling into his mom’s arms. “This is his favorite game,” says Beth. “We call it falling.”
“Cincinnati Children’s has kept close tabs on Charlie,” says Jason. After his treatment ended, Charlie began attending appointments to monitor his blood count every three months and then every six months. After Charlie’s appointment last December, he began his long-term care plan with visits to the oncology clinic once a year.
“With Down syndrome and leukemia, you’d think Charlie was the most unlucky kid in the world,” says Jason. “But thanks to Cincinnati Children’s, we realized leukemia was just a bump in the road.”
“Cincinnati Children’s gave us the best gift we could ever ask for – the life of our son,” says Beth.
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