Leukemia & Lymphoma Society: The Children's Initiative

Article by Dianne Callahan

It happened on a July day in 2012. Laura Speaks Perez recalls the terrifying moment: “We were frozen in shock. We put our 3-week old baby in God’s hands.” She and her husband, Beto, learned their daughter Bela had a particularly deadly form of cancer, Acute Myeloid Leukemia (AML).

Now, in 2020, the survival rate for children with AML is just 40 percent. E. Anders Kolb, M.D. of Nemours/Alfred I. duPont Hospital for Children is worried. “We have plateaued,” he says, regarding the treatment. “The tools in our toolbox are all sledgehammers.”

Dr. Kolb was among a group of pediatric oncologists to join The Leukemia & Lymphoma Society (LLS) in Atlanta in September 2019 to discuss a $100 million Children’s Initiative, a multi-faceted comprehensive attack on children’s cancer from every angle. This bold initiative includes more pediatric research grants, expanded free education and support services for children and families, and drives the creation of policies and laws that break down barriers to care.

As part of the Children’s Initiative, LLS is developing a platform to share pediatric cancer data so more researchers and physicians have access to this vital information. The Children’s Initiative also includes new research grants to advance novel treatments such as immunotherapy, to gain greater understanding of which patients are most likely to respond to therapy, and to address the long-term effects of treatment such as cardiotoxicity, infertility, and cognitive impairments.

The need is urgent: While many children survive acute lymphoblastic leukemia, the most common type of pediatric blood cancer, the treatments are harsh and outdated. The long-term effects of current therapies can create severe life-threatening complications.

In the last 40 years only four oncology drugs have been approved for first use in children. There is a need to do better. Dr. Kolb says, “We’ve gotten as much mileage as we can over the drugs we’ve repurposed for children that were built for adults.”

To address this truth, a significant part of the Children’s Initiative is a global precision medicine clinical trial for children with acute leukemia—LLS PedAL. One of the most important aspects of LLS PedAL is its global reach. This LLS-led trial, which will test targeted therapies in children with acute myeloid leukemia, and eventually other high-risk leukemias, will benefit children in the United States, and in several European countries, as well as the U.K., Australia, New Zealand and Canada.

Speaking as Bela’s mother, Laura says, “Creating precision, personalized treatment is vital. We don’t want to see any other families go through what we went through. The hope going forward is there will be so many more Belas surviving and thriving long-term.”

Bela is truly a miracle. Now 8-years-old, she has no memory of the harsh chemotherapy treatments and secondary illnesses that kept her in the hospital (often in the NICU) for much of her first year of life. She is a thriving, energetic third grader who loves gymnastics, creating beautiful art, and playing with her brothers.

In fact, Bela has been chosen to be the face of the Leukemia and Lymphoma Society’s 2021 Man and Woman of the Year Campaign in southern California. As the “Girl of the Year” Bela will help men and women candidates raise as much money as possible over 10 weeks next Spring.

“We so appreciate LLS’s laser focus on finding better treatments and cures for all blood cancers,” says Laura, “That’s why we are helping to raise funds to support their vital research and, especially, the Children’s Initiative.”

For more information on the LLS Children’s Initiative, visit https://www.lls.org/childrens-initiative, and to learn more about the 2021 LLS Man and Woman of the Year Campaign and how you can sign up to save lives, visit https://www.mwoy.org/.

Dianne Callahan is an author, motivational speaker, and three-time cancer survivor. Her book, Lighthearted Life: Simple Strategies to Live a Joy-filled Life Even in the Stormiest Times, is available on Amazon. She is writing a second book, Journey Through Illness, to be published in winter 2021.