5 things parents should know about childhood leukemia

Leukemia is the most common childhood cancer, but it’s still considered rare with fewer than 5,000 cases diagnosed in the U.S. each year. The most common diagnosis for pediatric leukemia patients is acute lymphoblastic leukemia (ALL), but acute myeloid leukemia (AML) also occurs in children.

These diseases start in the bone marrow, where new blood cells are made. “When leukemia starts to form, the bone marrow starts producing abnormal cells nonstop, almost robotically,” says Branko Cuglievan, M.D., section chief of Leukemia and Lymphoma at MD Anderson Children’s Cancer Hospital.

If your child has been diagnosed with leukemia, Cuglievan wants you to know these five things.  

1.  Siblings aren’t usually at risk of developing childhood leukemia.

One of the most common concerns for parents of children diagnosed with leukemia is the health of their other children.

Unless you’re aware of a genetic mutation in your family, Cuglievan says siblings generally aren’t at higher risk for developing the same disease as a brother or sister with leukemia.

However, if your child is a twin, especially if they’re identical, you should have the other twin tested for any abnormal cells. “If an identical twin develops leukemia within the first few months of life, the other twin will almost always develop the same type of leukemia,” Cuglievan says.

But symptoms of leukemia in children are typically obvious, including persistent fever, sleeping more than normal or limping without injury. Kids may also experience bruising, including in unusual locations like the back, abdomen or neck or thighs.

“You know your child,” Cuglievan says. “If you think something’s not right, don’t hesitate to get it checked out by your child’s pediatrician.”

2.  Treatment for childhood leukemia is often successful.

Thanks to treatment advances over the last few decades, including those by the late Emil Freireich, M.D., and other MD Anderson experts, 90% of patients with acute lymphoblastic leukemia will be cured after standard treatment. For patients with other forms of leukemia, like AML, the cure rate has also improved to 65% to 70%.

Treatment for acute lymphoblastic leukemia generally includes chemotherapy and lasts about two years. If your child has B-cell acute lymphoblastic leukemia, they may also receive immunotherapy.

AML treatment generally lasts about eight months and in some cases starts with a bone marrow transplant. Even though treatment is shorter, it is much more intense. “AML is more aggressive, so we have to treat it more aggressively,” Cuglievan says.

Leukemia can spread to the brain and spine, so  patients will receive routine testing throughout treatment to monitor any possible spread through a procedure called a lumbar puncture. The process is similar to an epidural. A needle inserted into the lower part of the spine to collect a sample of spinal fluid to test for cancer cells. “These are quick, and kids usually don’t feel anything,” Cuglievan says.  

At that time, patients usually receive an intrathecal chemotherapy injection in their spine to wipe out any cancer cells that may have spread.

After one month of treatment, patients will receive a complete blood count to see how they’re responding to treatment. “The goal is that patients will be in remission after one month,” Cuglievan says. But even if that’s the case, they’ll continue therapy for the planned timeline to make sure all cancer cells are wiped out.

Clinical trials play an important role in making treatments even more effective. That’s why at MD Anderson we’re working to expand leukemia clinical trials to include children. “No matter your diagnosis, there’s something for you at MD Anderson,” Cuglievan says.

3.  Kids can still be kids during leukemia treatment.

Pediatric leukemia patients may experience side effects like hair loss, mouth sores and diarrhea. But patients are still able to do many of the things they enjoy, with some considerations.

At the beginning of treatment, for example, patients will have to stop going to public places like school or day care because their immune systems will be compromised.

Once they start treatment, patients will come to clinic often for infusions and checkups. “After eight months, most patients have their hair back, and you’d never even know they were sick,” Cuglievan says.

Since treatments are given through an implanted port or a PICC line, patients can do certain activities like crafts or play video games during their infusions. And when their port is not accessed, kids can usually swim in a pool and play other favorite sports.

“Kids can still be kids during leukemia treatment,” Cuglievan says.

4.  There are treatment options for childhood leukemia relapse.

The cure rate for relapsed patients has improved dramatically, thanks to clinical trials, Cuglievan says.

Treatment for relapsed leukemia usually includes a stem cell transplant or immunotherapy, including CAR T cell therapy.

With CAR T cell therapy, the patient’s own T cells are modified to better recognize and attack cancer.

Stem cell transplants replace the patient’s cells with either their own cells (autologous stem cell transplant) or with healthy cells from a donor (allogeneic stem cell transplant). “Siblings are often a good match for a stem cell transplant, but parents or strangers can be an option,” Cuglievan says.

5.  There’s reason for hope.

As recently as the 1960s, patients with childhood leukemia had a survival rate of only 30% to 40%. But today, children with leukemia are going on to live full lives after treatment.

“The cure rate for these children has improved dramatically, so there’s reason to have hope,” Cuglievan says. And, he expects that with further treatment advances this will continue to improve in the near future.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.