Stories about: immunotherapy

Battling aplastic anemia: Clinical trial gives hope to Eli and his family

Eli, who has aplastic anemia, smiles while getting a transfusion
PHOTOS: SAM OGDEN

When Eli came home from baseball practice this past April with bruises on his body, his mom Jessica, an internal medicine specialist, and his dad Bryan, a trauma surgeon, didn’t think anything of it. “We assumed his coach was just throwing hard pitches, because every time Eli got hit with the ball, his skin bruised,” says Jessica. But 10-year-old Eli didn’t let a few bruises stop him. He continued to play baseball and basketball, work hard in his fifth grade classroom and goof off with his two younger sisters, 6-year-old Anna and 3-year-old Sarah.

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Young actor plays unexpected role

MIBG-neuorblastoma

Before he was diagnosed with neuroblastoma in 2014 at the age of 11, Noah Smith was a veteran of the children’s theater stage. The suburban Boston boy had been cast in ensembles. He’d played Kurt Von Trapp in “The Sound of Music.”

Little did Noah know that he would soon star in a video designed to allay the fears of children facing radioactive medication delivered intravenously in a lead-lined room where they’d live, under restrictions, for a week. After he received the medication, his parents would only be able to visit him one at a time, standing behind a lead shield and unable to touch him. Nurses would limit their time in his room, entering briefly to check vital signs. Parents and nurses alike would wear badges to monitor their exposure to the radioactive child in the bed.

Add to this the fact that most children who get the cancer that originates in nerve cells are under 5 and it’s easy to understand the anxiety these young patients and their families might feel anticipating MIBG (metaiodobenzylguanidine) therapy.

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