KK’s story: How research made a big difference

15-year-old KK remembers bruises suddenly appearing on her arms and legs followed by intense headaches and discomfort caused by swollen gums.

At first, she didn’t think much of it. Maybe she wasn’t getting enough sleep. But bruises kept appearing, and eventually her gums became so swollen that she struggled to brush her teeth.

“The symptoms became more frequent, and I started losing my appetite more and more, which is very big for me because I’m an eater,” KK laughs.

Concerned, her mom, IlaSheika, took KK to a hospital in their hometown. There, doctors told her it was possible she had leukemia.

KK doesn’t recall feeling scared or worried.

“It was more like, ‘Wow, I might have leukemia. I might actually have cancer,” she says.

A ‘wave of acceptance’

KK was referred to Children’s Health℠, home to the Pauline Allen Gill Center for Cancer and Blood Disorders, the largest childhood cancer and blood disorders center in North Texas.

Further testing revealed that KK had acute myeloid leukemia (AML), which starts in myeloid cells in the bone marrow and quickly moves into the bloodstream. Myeloid cells are immature blood cells that develop into red blood cells that carry oxygen, white blood cells that fight infection and platelets that help with clotting.

“AML invades the bone marrow and wreaks havoc all over the body,” says Richard Voit, M.D., Pediatric Hematologist/Oncologist at Children's Health and Assistant Professor at UT Southwestern.

The confirmation didn’t shock KK. Instead, she felt a “wave of acceptance.”

“I thought if I end up passing away from cancer, it may be heartbreaking, but I’ll be reunited with Jesus,” KK remembers. “But I was also not ready to give up because I thought God still had a plan for me.”

Connecting patients to game-changing clinical trials

KK’s care team encouraged her as she started her first two intensive months of chemotherapy and experienced significant complications, including a brain bleed that required her to have neurosurgery.

“We knew that KK’s leukemia cells were particularly strong due to a specific mutation in the KMT2A gene that make them harder to treat. But we’re trying to change that in the lab with research,” says Dr. Voit.

KK’s care team was prepared for the multiple side effects she experienced from chemotherapy and for managing them safely.

“There were days when I felt like sleeping and never waking up,” says KK.

After KK’s leukemia did not respond to two rounds of chemotherapy, her oncology team consulted with the Pediatric Developmental Therapeutics Program (DTP), a team that connects kids who have a disease that is challenging to treat with the best clinical trials for their specific type of cancer.

The DTP team recommended KK for a clinical trial at a different center specifically for patients who have AML with KMT2A gene mutations.

“We have also recently opened clinical trials at Children’s Health to treat kids with AML, including those with KMT2A gene mutations,” says Samuel John, M.D., Pediatric Hematologist/Oncologist, Assistant Professor at UT Southwestern Medical.

After just two months on the clinical trial with this novel treatment, KK’s leukemia was in remission. And being in remission meant she was healthy enough to receive a bone marrow transplant – which would be the best way to prevent KK's leukemia from coming back again.

“We couldn't find the leukemia anymore. As a doctor, as a scientist, if that doesn't get me up out of bed in the morning, I don't know what will,” says Dr. Voit.

Looking to the future

It’s been months since KK’s bone marrow transplant – and there have been no signs of relapse.

“I’m feeling a lot better and stronger,” KK says. “I defeated cancer. My body is free from it.”

Her advice for others facing a similar diagnosis is simple: Never give up on something that is trying to control your body.

Now 17, KK is looking forward to graduating high school and potentially joining the U.S. Navy.

“She wants to travel the world,” her mom, IlaSheika, says.

And while she still visits Children’s Health to check in with her care team every month, she’s very happy to be in remission.

“I’m just chilling now,” she said with a smile. “I’m not taking any pills. I’m cancer free and life is good.”

Join the registry to save a life

If you're between the ages of 18 and 40, you can receive a free home-test cheek swab kit from the National Marrow Donor Program to see if the proteins in your cells match the proteins in the cells of someone who has sickle cell disease, leukemia, or 73 other diseases that can be cured or treated with a bone marrow transplant. Learn more about bone marrow donation, the National Marrow Donor Program (NMDP) or how to join the registry to save a life.

Learn more

The Pauline Allen Gill Center for Cancer and Blood Disorders at Children’s Health is one of the top pediatric oncology programs in the nation, offering exceptional care in both Dallas and Plano. The Gill Center’s affiliation with UT Southwestern allows participation in nearly 250 clinical trials. Our advanced research and expertise help children achieve some of the highest survival rates in the region. Learn more about our programs and services.