Stories about: Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

The space between heartache and happiness: Two sons with adrenoleukodystrophy

Paul and Liliana Rojas with their sons, Brandon and Brian, both of whom have adrenoleukodystrophy (ALD).
The Rojas family at a recent visit to Boston Children’s.

When Paul and Liliana Rojas talk about their life, they describe it in one of two ways — the way it was before their sons, 10-year-old Brandon and 7-year-old Brian, were diagnosed with ALD, and the way it is after. Their story is one of heartbreak — but also hope, in the form of a new clinical trial.

Learn more about the results of the clinical trial, recently published in the New England Journal of Medicine, that halted the progression of Brian’s ALD.

ALD is short for adrenoleukodystrophy, a debilitating brain disease that simply goes by its initials.

“Life before ALD was pure happiness without worries,” Paul says. “It was anything a parent could wish for — two boys with no medical issues, active, athletic, the healthiest boys ever.”

The two were inseparable. They played sports together in their hometown of Dover Plains, New York; idolized superheroes; danced like crazy; and dreamed of someday inventing video games. Brian was Brandon’s shadow.

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How to manage family life when your child has cancer

Valerie Graf and family
Valerie, with husband Doron, son Evan and daughter Ruby

When our daughter, Ruby, was diagnosed with acute lymphoblastic leukemia (ALL) at one and a half years old, my husband and I were immediately transformed from working parents with two young children, to parental caregivers for a child with cancer. Between hospital stays, medications and appointments, there was so much to keep track of. It can be overwhelming at times, but there are ways to manage life after your child is diagnosed with cancer.

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A guide to childhood brain tumors

There are many different types and classifications of pediatric brain tumors, based upon cell structure, composition, rate of growth and location. A child’s tumor may have the same microscopic appearance to an adult tumor, but the mutations that cause its growth are completely different. Learn about the six most common types of childhood brain tumors.

  • 6 types of pediatric brain tumors

Find out more from the Pediatric Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

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A parent’s guide to clinical trials

Photo of science lab

Children with life-threatening conditions, such as cancer, are often candidates for clinical trials. What are they? Which factors should parents weigh in determining whether enrolling in one is a good option for their child? Dr. Steven DuBois, director of the Advancing Childhood Cancer Therapies Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, answers questions about clinical trials.

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