One month shy of his 11th birthday, Jamey Sultan told his parents his neck hurt. “He said he couldn’t move his head,” said his mother Karen Sultan.
“He’s not the kind of kid who complains a lot,” she said, so going on “parental instinct,” Karen and David Sultan took the oldest of their three sons to the hospital, where they were told their preteen either had mononucleosis or leukemia. Within a few hours, the Chevy Chase couple learned their son had childhood acute lymphoblastic leukemia, sending them on a crash three-and-a-half year boat ride filled with hospitalizations, treatments that often seemed worse than the cancer itself and a whirlwind of emotions.
“At 11 years old, you shouldn’t be facing your own mortality,” said Karen Sultan, who teaches in the Montgomery County school system.
ALL, as it is commonly referred, is the most common of pediatric cancers. Twenty six percent of children under the age of 15 who have cancer have ALL. It is a fast-growing type of blood cancer in which too many immature white blood cells are found in the blood and bone marrow, according to the National Cancer Institute at the National Institutes of Health in Bethesda.
It occurs at an annual rate of 35 to 40 cases per one million people in the United States. Generally, about 2,900 children younger than 20 are diagnosed with ALL each year, according to the National Cancer Institute.
The American Cancer Society estimates that there were 1.7 million new cancer cases in the United States during 2014 and close to 600,000 cancer-related deaths. Concerning pediatric cancers, 2014 saw almost 16,000 new cases and close to 2,000 deaths for those less than 20 years old.
The good news is that childhood cancers are much rarer than adult cancers. Pediatric cancers represent about one percent of all new cancers diagnosed in the United States, according to the American Cancer Society.
The bad news is that because childhood cancer is so rare, the limited dollars going to research and new drugs are largely being spent on adult cancers like breast, prostate and skin cancers.
“The research is terrible. When he was sick,” Karen Sultan said of her son, “they didn’t have any new cancer drugs for kids. They gave him massive [amounts of] adult drugs” and the after effects were extreme.
Dr. Malcolm Smith, associate branch chief for pediatric oncology at the National Institute of Cancer, acknowledged that fewer dollars are being spent on childhood cancers, but he painted a more optimistic picture.
Since so many more adults have cancer as compared to children, “it really just becomes a matter of numbers,” he said. “The market is much greater for adult cancers. Fortunately, so many [drugs] may also be effective for childhood cancers,” Smith said.
When proposed drugs reach a stage where they need to be tested on people to see how the medication is tolerated by the body, adults are more likely to be studied because there are so many more candidates, he said.
Once a drug is proven effective for adults, it then is studied to see what the proper dose should be for children, he said.
The National Cancer Institute as well as other groups conduct clinical trials for children with cancer, but most of these trials are on already-approved drugs on adults. However, Smith said, there is “substantial research being done for a whole range of childhood cancers,” Smith said.
Nancy Goodman is the executive director of Kids V Cancer in Washington D.C., an organization she began following the death from brain cancer of her 8-year-old son. Her organization lobbies for pediatric cancer funding.
According to Goodman, it takes an average of 9.5 years following the approval of a cancer drug for adults for corresponding pediatric research on that drug to commence. Half of all the chemotherapies used for childhood cancers are greater than 20 years old, she said.
“The problem is, the market is really small,” said Goodman, whose form of cancer her son, Jacob, had only affects 400 children a year.
But Dr. Arthur S. Levine, senior vice chancellor for the Health Sciences and Dean of the School of Medicine at the University of Pittsburgh, called it “a false assumption” that drugs to help cure cancer are either for adults or for children. “What’s good for adults is good for children,” he said, adding that many of the same drugs used for adults are “tweaked” for the best dosage for a young patient.
There has been more progress made in the field of pediatric cancer than adult cancer, Levine said, calling leukemia “virtually curable” in children.
Jamey Sultan is cured of his cancer and currently is a 12th grader in the magnet program at Montgomery Blair High School. He plans to major in engineering as a pre-med student next year.
Due to a combination of receiving so many strong drugs as well as his desire to move on in life, the young man doesn’t remember much of his life with cancer. “The treatment made my memory really bad,” he said. All he does know is that he despises water as it reminds him too much of having to swallow pills. He also dislikes the smell of saline, he said during an interview in his home last week.
He tentatively has decided to dedicate his working life to curing cancer. For the past two summers as well as several days a week during the school year in an internship program, Sultan has worked at the National Institutes of Health, helping to develop cancer drugs.
“My title is special volunteer,” he said.
While thrilled that their son has a chance for a great future, unlike their son the Sultans have not forgotten what Jamey – and everyone else in the family – went through.
Every treatment, every medicine hit their son hard. He used to be “super smart in his math abilities; now it’s not as easy,” Karen Sultan said. He has developed ADD-like symptoms.
His younger brothers also were affected. During their Jamey’s numerous hospitalizations, Noah, who is now 15, had a bout when he too feared he had cancer. “He had a rubbery bump on his chest which turned out to be a spider bite, but he was hysterical. He thought he had cancer,” Karen Sultan remembered.
And Coby, now 13, brought home a paper from school he had written for the New Year when he was only 5 or 6. “My wish is my brother will get out of the hospital. I hope my wish comes true, because then I can play with him longer,” he wrote in the paper his mother cherishes.
Jamey Sultan faces possibly medical risks, including heart disease and skin cancer, but for now the Sultans are just happy their eldest son is healthy and active. He boxes and has a girlfriend.
To any young people with cancer, Jamey Sultan suggested they concentrate on what they want to do once the treatments are over. “There’s not a lot you can do” when sick, but “once it’s done, it’s done,” he said.
His mother’s advice to parents is “keep it real.” Try hard to establish routines and structures, both for the sick child as well as others in the family. Just remember, she stressed, “Life does come back.”