By The Leukemia & Lymphoma Society
Did you know that blood cancer is the most common cancer diagnosis for children, accounting for 40% of pediatric cancer cases? In fact, nearly 55,000 children and adolescents in the United States currently have blood cancer or are in remission from blood cancer.
It wasn’t long ago that a blood cancer diagnosis meant young patients would most likely lose their lives, but today, advances in medicine have given most children a chance to grow into adulthood. Still, treatment options for pediatric cancer patients aren’t adequate. Only 5 percent of cancer drugs are approved for first-time use in children, so when a child receives a cancer diagnosis, their options are very limited. In most cases, their families have no other option than to accept side effects from cancer treatments that were primarily developed for adults.
The downside: the treatments that help survivors reach remission have many different side effects that ripple out and cause other health issues. The result? A shocking 80% of childhood cancer survivors have chronic, often debilitating health issues resulting from cancer treatment.
Kids deserve better, safer, less toxic treatments.
That’s the reason The Leukemia & Lymphoma Society (LLS) launched The Dare to Dream Project—to create a world where pediatric blood cancer patients not only survive but also thrive after treatment. Dare to Dream is achieving this by funding blood cancer research, offering free resources and support, and driving advocacy efforts for equitable, accessible, and affordable healthcare for every child. At the heart of this bold initiative, in partnership with researchers and healthcare professionals across the globe, LLS launched the first-ever acute leukemia LLS PedAL Master Clinical Trial—changing how children with acute leukemia are treated by replacing “one-size-fits-all” chemotherapy with new, safer treatments tailored to each child’s unique tumor biology—leading the way for more pediatric blood cancer treatment research.
These endeavors will directly help kids with blood cancer all around the world. Kids like 6-year-old Cayden.
Blood cancer changed Cayden & Courtney’s lives—twice.
Cayden is a vivacious child whose world turned upside down when he was diagnosed with acute lymphoblastic leukemia (ALL) in April 2020. His mother, Courtney, remembers receiving the
devastating news like it was yesterday. “After the doctor said, ‘Cayden has leukemia,’ I didn’t hear anything else,” she recalls. “It felt like my heart literally imploded.”
She learned that Cayden had a rare form of this cancer called Philadelphia Chromosome (PH+). Just 3 to 5 percent of pediatric ALL cases are PH+. Cayden underwent treatment for two years and reached remission—but not without challenges. He experienced common side effects like hair loss and low energy, and he also developed serious complications, including sepsis.
By April 2022, Cayden and Courtney thought their ordeal was over when they learned he was in remission. She became an ambassador for Dare to Dream, enthusiastically serving as a volunteer with LLS—right up until Cayden’s cancer came back, only 9 months later.
Another battle with ALL began for Cayden and Courtney.
Cayden began complaining of pain in his foot shortly after Christmas in 2022. At first it came and went, but a few weeks later, it became persistent and started swelling. His oncologist initially diagnosed him with osteonecrosis, or bone death. They admitted him for about a week and treated his condition with pain medication and antibiotics.
A couple of days later, he started having pain in his arm, and Courtney immediately contacted his pediatric oncologist. They ordered a bone marrow biopsy that turned Cayden’s, Courtney’s, and the rest of their family’s world upside down all over again.
“It’s not good. Cayden relapsed.”
When those words escaped the lips of Cayden’s nurse in February 2023, Courtney was in disbelief. “9 months. We only got 9 months,” she thought. “9 months of no chemo. 9 months of a pseudo-normal life. 9 months of no medical supplies in our house.”
She was devastated and heartbroken—no parent wants to see their child relapse after everything they’ve already been through. After a couple of days, she sprang into action, researching treatment options as doctors admitted Cayden to the hospital for 23 days of treatment.
Thanks to LLS-funded research and Dare to Dream, Cayden received CAR T-cell treatment.
As a Dare to Dream ambassador, Courtney advocated and raised awareness for children who have blood cancer and their families. And she benefited from this role as well. “As an ambassador, I learned so much about treatment options like CAR-T,” she shares. “That knowledge helped me to be better informed and feel more confident going into conversations
with Cayden’s oncologists after his relapse.” LLS’s early and sustained research investment was vital to the development of CAR-T immunotherapy, which is now a lifeline for thousands of blood cancer patients.
Courtney and Cayden’s healthcare team wanted to give him effective treatment with as few side effects as possible, so they harvested his white blood cells at Duke Children’s Hospital in preparation for CAR T-cell treatment. “The process of harvesting his cells was painless, thankfully, and he even took a nap!”
Basically, doctors taught Cayden’s T-cells—a type of white blood cell—to create chimeric antigen receptors (CARs). CARs help T-cells identify and destroy cancer cells. For pediatric cancer patients like Cayden, this helps them target cancer without damaging their healthy cells.
When Cayden’s cells were ready, he and Courtney returned to the hospital for four days of chemotherapy followed by the CAR T-cell infusion. “Cayden didn’t feel a thing and the only side effect he experienced was the fact that he smelled like creamed corn for 24 hours,” Courtney says.
Cayden is thriving following chemotherapy, his target immunotherapy treatment, and CAR-T infusion—thanks, in part, to Dare to Dream.
He will start second grade in September, and is back to his normal, playful, energetic self. Currently in remission, he’s waiting for a bone marrow match, with the hope of receiving a bone marrow transplant.
When patients of color don’t have a matched donor in their family, the wait for a bone marrow match can be long, as minority donors are underrepresented in match programs. As an example, there is only a 29% chance an African American will be able to find a bone marrow match. NMDP, formerly Be the Match, exists to match donors and blood cancer patients from all underrepresented communities. Register today and find out if you might be the right match for Cayden, or any other child waiting for a second chance at life.
LLS is working so hard to change the status quo for pediatric cancer treatment—so that kids like Cayden can get cancer treatment with as few side effects as possible. And dedicated ambassadors like Courtney are pivotal to Dare to Dream’s continued success.
“I dream of a time where treatments can be so efficient and so effective that our children don’t have to endure years to a lifetime of treatment and/or side effects. Where a cure can be found without drastically affecting their quality of life moving forward.” Together, we Dare to Dream so their dreams come true.
Learn more about The Dare to Dream Project, and if you or a loved one need personalized disease information, resources, or support, you can contact one of our Information Specialists for help.
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