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Benjamin the Brave

Read about our wonderful boy, and about the unique giving opportunity in his name through the Johns Hopkins All Children's Foundation.

Rainbow Stars

Request a Rainbow Star for a child with cancer, volunteer to make stars, or order a prismatic rainbow star to support research.

Blog

Our daily journal chronicling Benjamin's leukemia diagnosis, his 772 days of treatment, his life, his death, and his unparalleled bravery.

Day 695/67

Laura Gilkey on November 26, 2016

It was another night of little sleep. Benji and I stayed up late to watch the original Charlie and the Chocolate Factory (again), and then, for the second night in… Continue Reading Day 695/67

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, hair loss, platelets, relapse, spleen6 Comments

Day 694/66

Laura Gilkey on November 25, 2016November 25, 2016

We had a rough night up here on 7 South. Benjamin woke up many times coughing, and with each episode he cried in pain. He couldn’t pinpoint where the pain… Continue Reading Day 694/66

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, blood transfusion, hair loss, neutropenia, platelets, relapse10 Comments

Day 693/65

Laura Gilkey on November 24, 2016November 25, 2016

Today was a very good day. I admit the holiday-ness of it all threatened my emotional stability more than once. But Benji felt better today than he has in many… Continue Reading Day 693/65

Categories: Uncategorized Tags: acute lymphoblastic leukemia, blood transfusions, family, gratitude, marriage, platelets, relapse, research, siblings5 Comments

Day 692/64

Laura Gilkey on November 23, 2016

Benjamin woke up early this morning with a high fever and tummy pain. He vomited during shift change a few minutes later. It was a strange, dark, pungent liquid. There… Continue Reading Day 692/64

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, Blinatumomab, CAR-T, clinical trial, nausea, platelets, relapse, spleen8 Comments

Day 691/63

Laura Gilkey on November 22, 2016November 23, 2016

Benjamin’s fever rose and fell throughout the night, and into the day. At morning lab draw, our nurse took a blood culture. Nothing has come back positive for bacterial growth.… Continue Reading Day 691/63

Categories: Uncategorized Tags: acute lymphoblastic leukemia, CAR-T, cyclophosphamide, etoposide, family, fever, platelets, relapse, siblings10 Comments

Day 690/62

Laura Gilkey on November 21, 2016November 22, 2016

Benji asked for pain medication last night. His side started hurting too badly to sleep. So for the first time in a week, he took a low dose of oral… Continue Reading Day 690/62

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, neutropenia, platelets, port, relapse, transfusion5 Comments

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