Raven Bates, 13, is having fun being a kid these days. She plays soccer, does handstands and back bends with friends and really anything else she can think of outdoors. And the best part is she’s pain-free, thanks to a drug her doctors at the Center for Cancer and Blood Disorders at Children’s switched her to three and a half years ago.
The drug is called hydroxyurea [high-drox-ee-you-ree-a] and it is used for kids like Raven who have sickle cell disease.
It reduces the pain associated with the disease, improves blood count and reduces the number of blood transfusions patients need. The best part is that hydroxyurea has few, and in some cases, no side effects. It has been used to treat sickle cell for over 20 years, is FDA approved and has a low toxicity.
Before going on hydroxyurea, Raven said couldn’t play or concentrate at school because “the pain hurt really bad.” The pain episodes often resulted in Raven having to be hospitalized at Children’s for up to a week at a time. Her mother, Kanequa lost her job because she missed so much work from Raven’s hospitalizations.
But the worst part, Kanequa said, was watching her little girl go through so much pain.
“I used to tell her all the time that I would take the pain away if I could,” Raven’s mom said. “I would hold her and tell her that one day she would be a testimony to other kids that are going through the same thing.”
Kanequa said when Raven’s doctors asked if they could try hydroxyurea she told them, “I’ll try anything that will take my baby’s pain away.”
Raven was considered a severe case after her many pain crises, making her eligible to take hydroxyurea.
Now, almost four years later, Raven said, “I don’t have to worry because I don’t have any pain anymore.”
Since 1995, only patients with severe pain symptoms from sickle cell disease, over 100, have been treated with hydroxyurea at Children’s and experienced similar results as Raven. But last year, after a study at Children’s showed that hydroxyurea is safe for children of all ages, doctors with the Pediatric Sickle Cell Disease Program at Children’s began offering it to all sickle cell patients.
They now want to see more of their patients experience the benefits of the drug.
It’s as simple as asking your doctor for more information next time you take your family member or loved one with sickle cell for their next appointment. The drug is taken once a day in pill form and a monthly blood count check is required while on hydroxyurea.
For more information, call 214-456-6102.
If you are as inspired as much as we are from Raven’s story, leave her an encouraging comment.