It’s dusk in Indio and Serena Melvin is practicing her swing in a batting cage with her dad, Jason. That’s their routine: a few pitches every day after school.
“Remember your shoulders,” Jason says before lobbing the ball to his 11-year-old daughter. Playing softball was her idea. Jason first enrolled Serena in cheerleading. “In the third grade, she said, ‘Dad, I don’t want to do this. I want to play sports,'” he recalls.
Always outspoken and motivated, Serena was a star on her competitive softball team by the fourth grade. But in 2015, as summer turned to fall, severe inflammatory bowel disease (IBD) had her fighting for her life.
“I told my mom that I wanted the surgery. The pain was so bad.”
Serena’s symptoms began earlier that summer with abdominal pain. She was also using the bathroom more frequently. Sandra Melvin, Serena’s mom and a registered nurse, closely monitored her daughter. At first, she thought Serena had food poisoning after a slumber party. But when Serena had blood in her stool, Sandra suspected something more serious.
“My first thought was that my daughter had colon cancer,” she says. “But she was much too young for that.” To the family’s relief, a doctor concluded that Serena was all right, and she was cleared for a family vacation to Hawaii in August.
A day into the trip, her condition took a turn for the worse. Vomiting severely, Serena was rushed to the emergency room. The doctors diagnosed her with ulcerative colitis, a form of IBD. Once Serena was stable enough, the family flew back to Indio, where she was admitted to a children’s hospital. Her health rapidly deteriorated.
“Your child is not an algorithm. Make sure the treatment is specific to your child.”
Finding quality treatment for a child with IBD can be a challenge. IBD—which entails chronic inflammation of the large intestine, rectum, and colon—affects significantly more adults than children. For both, symptoms can range from moderate to severe, and in dire cases surgical removal of the colon is required.
After 3 weeks in the hospital and 3 blood transfusions, Serena had lost over 30 pounds. “I felt like we didn’t have much time and I didn’t feel she was getting the best care,” says Sandra. “Being a nurse, I started looking for research hospitals with the best evidence-based treatments. I wanted more than standard or typical care for Serena.”
Two physicians, and the mother of a classmate who had Crohn’s disease—a subdivision of IBD—suggested Dr. Shervin Rabizadeh, director of Cedars-Sinai’s Pediatric Gastroenterology and Inflammatory Bowel Disease Program. Sandra and Serena drove 3 hours from Indio to Los Angeles with a thick binder documenting Serena’s previous tests and treatments. Serena was admitted to the Cedars-Sinai ICU within a couple of days.
“Dr. Rabizadeh met with us for 2 hours,” Sandra recalls. “It’s unheard of for a doctor to give you that much time.”
At Cedars-Sinai, Serena received another blood transfusion and a powerful intravenous dose of Remicade, a drug used to reduce acute inflammation.
“My dad gave me his gold necklace with a cross to keep me strong,” says Serena. “The pain was a level 10, and I was afraid I wasn’t going to make it.”
While Sandra fielded the medical questions, Jason, who had served in the Army, traveled to the hospital in the evenings after work and kept his daughter’s mind in the fight. Notes of support from her softball teammates and coaches also poured into the hospital room.
“The pain was a level 10, and I was afraid I wasn’t going to make it.”
When Serena didn’t improve as much as Dr. Rabizadeh had hoped, he called on Dr. Philip Fleshner, director of Colorectal Research at Cedars-Sinai.
Dr. Fleshner, a scientist with over 400 published articles relating to IBD and colorectal surgery, decided Serena should undergo a colectomy. The procedure would be followed by an innovative surgery to create a J-shaped pouch from the small intestine that attaches to the rectum. The surgeries would alleviate Serena’s pain with minimal long-term effects, allowing her to eat a fairly normal diet, hold her stool, and relieve herself at will.
As the severity of Serena’s ulcerative colitis became clear, Sandra candidly described the procedure to her daughter, wanting to involve her in the decision.
“I told my mom that I wanted the surgery,” says Serena. “The pain was so bad.”
After the colectomy, as Serena recovered in the ICU, Sandra had a much-needed good night’s sleep. She had finally found doctors she trusted.
Days later, Serena was home using a walker and an ileostomy bag. On Halloween, just a week after her surgery, she donned her pirate costume and went trick-or-treating. “I carried her from door to door,” says Jason. “She wanted to go, so I made it happen.” The following spring, Serena joyfully headed back to softball practice.
Serena’s road to recovery hasn’t been easy, and children with IBD face special challenges. She missed most of fifth grade and had to be hospital-schooled. A recent flare-up resulted in a trip to the ICU.
But Serena is up for the challenge. “She told me her new motto is ‘Girl interrupted, but fighting back!'” says Sandra with pride.
Sandra’s suggestions for parents of kids with IBD:
- Search for the right doctor. Dr. Rabizadeh was the third doctor to treat Serena. Sandra never gave up looking for the top pediatric IBD team in the country. She questioned Serena’s initial care provider, did research, and contacted friends until she found a doctor she was happy with.
- Advocate for treatment tailored to your child’s needs. “Your child is not an algorithm,” Sandra says. “Make sure the treatment is specific to your child.” Point out all of their symptoms and anything that seems out of the ordinary so all of these factors are considered when determining the severity of your child’s condition. More severe disease may warrant more aggressive treatment. And if a course of treatment doesn’t seem to be going well, don’t hesitate to reach out to your doctor, or to get a second opinion. “Dr. Rabizadeh was actually our third opinion,” Sandra says.
- Keep a detailed notebook. Sandra kept track of Serena’s daily weight, bowel movements, and how she tolerated certain foods. She also knew from her nursing background that stress and fear can make it hard to remember things. Writing down the numerous tests and procedures helped her maintain peace of mind and provide thorough info to Serena’s care team.