Nytasha Jette was panicked when her two-month-old son, Elyahs Jones, was found to have an extraordinarily high white blood cell count — over 300,000 — during a regular check-up. The family physician noted that Jones had very pale hands and was worried that the child wasn’t getting proper blood flow.
Jette rushed Jones to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, where he was diagnosed with a rare disease called MLL-rearranged B-lymphoblastic leukemia. News of the diagnosis “was really hard to hear,” Jette recalls. But through it all, including a clinical trial testing a new innovative treatment, she and Elyahs felt support.
“The care team at Dana-Farber/Boston Children’s became my second family,” she recalls. “They grew to know Elyahs and weren’t just doing their job, if you know what I mean. They built a connection with me.”
Elyahs immediately started on treatment at the Jimmy Fund Clinic the day after his diagnosis. His physicians, Barbara Degar, MD, and Jessica Tsai, MD, PhD, started him on an infant leukemia chemotherapy regimen with the hopes that once Elyahs was in remission, he could be brought in for a bone marrow transplant. A transplant would help Elyahs to regenerate a new immune system.
Unfortunately, Elyahs’s disease was very resistant to the treatment. He also developed several side effects from the chemo.
Although the mother-son duo was at Dana-Farber/Boston Children’s every day, and Elyahs’s energy levels had obviously dwindled from the treatment and its side effects, Jette kept her head up.
“Those times were tough. I tried to stay optimistic. That got me through it,” she says.
She says that her treatment team helped tremendously as well — and they left no stone unturned. With Jones’ team running out of treatment options, Degar and Tsai, Elyahs’s doctors, turned to colleagues for advice. A potential option came to light: the BCL-2 inhibitor, venetoclax, had shown several successful cases in other pediatric patient with refractory leukemia.
The BCL-2 inhibitor blocks BCL-2, a protein which helps tumor cells evade. Another benefit of the drug for pediatric patients is that it can be administered as a suspension.
“Often, a limiting factor for our patients is that the drugs are initially designed for adults and it’s difficult to adapt them for a child who may not be able to swallow a whole pill,” Tsai says. “Having venetoclax available as a suspension was very important.”
Recognizing the promise of this drug for her son, Jette agreed to sign on. Fortunately, venetoclax had the intended effect of Jones’ disease, and his bone marrow disease was found to be in remission three weeks into treatment. This made him eligible for a bone marrow transplant.
Still, mother and son weren’t quite out of the woods yet. Their care team would be ready.
Relapse and CAR T-cell therapy
100 days after his transplant, Jones’ disease relapsed — which, according to Tsai, was unfortunate, but not surprising given how aggressive MLL can be.
Degar and Tsai quickly recognized another opportunity to use a promising new treatment, CAR T-cell therapy. CAR T-cell therapy is a type of treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they will attack cancer cells. Soon after, Jones would be declared in remission.
Jones’ case was eye-opening for Tsai.
“There is a lot of promise in these new drugs, and a lot more work to do when it comes to these rare disease types,” she says.
Now two years old, Elyahs is full of energy and life, a development that Jette cherishes even if he can sometimes be a handful. He loves to color and dance.
“He’s a little wild,” she laughs. “But that’s a blessing.”
Today, Jette is working on a book about her experiences, which she hopes will help other parents that were in her position.
“This is exactly why I wanted to become a pediatric oncologist,” Tsai says. “I met Elyahs at diagnosis and have been treating him ever since. His mother and I have gone through some dark times and cried together, but we’ve also celebrated together. We share so many memories. I was there when he first started walking around the clinic. Those types of relationships are why I am in this.”