The Childhood Cancer Blog
The Childhood Cancer Blog
Edie was just 5 months old when she began experiencing stomach pain. Her parents knew something wasn’t right and after a series of tests, Edie was diagnosed with stage 4 neuroblastoma. By the time she was 2 years old, Edie had been fighting neuroblastoma for over half her life and treatment wasn’t working.
Her cancer persisted. Out of options, Edie went to Children’s Hospital of Philadelphia (CHOP), an Alex’s Lemonade Stand Foundation (ALSF) Center of Excellence.
CHOP doctors tested Edie’s blood and found she was harboring a specific mutation called anaplastic lymphoma... Read More
Leevi was diagnosed at age 2 with ependymoma and relapsed at age 5. After frontline treatment failed, Leevi enrolled in a clinical trial.
Oncology researcher Dr. Meenaskshi Hegde, from Texas Children’s Hospital, is working to change the outcome for kids facing ependymoma and to ensure that treatments are available at several institutions.
Using Alex's Lemonade Stand Foundation (ALSF) Center of Excellence (COE) grant funding, Dr. Hegde is leading a Phase 1 study of CAR T cells for patients with refractory or relapsed ependymoma. The study, which opened in early 2022 at three children’s hospitals, will give patients access to treatment... Read More
The National Institutes of Health define rare diseases as conditions that affect fewer than 200,000 people. But for families facing one of these diseases, like Beckwith-Wiedemann Syndrome (BWS), these diagnoses don’t feel rare. BWS affects approximately 1 in 10,000 kids and is linked to increased risk of certain childhood cancers, including Wilms tumor and hepatoblastoma. With proper treatment and monitoring, these cancers are treatable, which makes it critical to properly identify kids with BWS... Read More
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