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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 701/73

Laura Gilkey on December 2, 2016December 3, 2016

Look at the boy in front of you.  Today I took this advice. This morning, when I heard the nurses come in for shift change, I didn’t jump up to… Continue Reading Day 701/73

Categories: Uncategorized Tags: absolute lymphocyte count (ALC), acute lymphoblastic leukemia, apheresis, platelets, relapse, transfusion9 Comments

Day 700/72

Laura Gilkey on December 1, 2016December 2, 2016

This morning’s labs were frankly terrifying. Benji’s white cell count and neutrophil count doubled again, and his blasts went up to 73%. His absolute blast cell count is so high.… Continue Reading Day 700/72

Categories: Uncategorized Tags: absolute lymphocyte count (ALC), acute lymphoblastic leukemia, apheresis, inotuzumab, platelets, relapse, transfusion11 Comments

Day 699/71

Laura Gilkey on November 30, 2016December 1, 2016

Benji and I slept soundly in our new bed, in our new room on the seventh floor. His labs were stable again this morning. His neutrophil and white blood cell… Continue Reading Day 699/71

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, apheresis, blood transfusion, family, platelets, relapse8 Comments

Day 698/70

Laura Gilkey on November 29, 2016November 30, 2016

It’s our first night in a new room up here on the seventh floor. Tomorrow will be the 30th day of this admission, when we are required to switch rooms,… Continue Reading Day 698/70

Categories: Uncategorized Tags: absolute lymphocyte count (ALC), absolute neutrophil count (ANC), acute lymphoblastic leukemia, anesthesia, apheresis, CAR-T, child life, immunotherapy, inotuzumab, platelets, relapse, transfusion11 Comments

Day 697/69

Laura Gilkey on November 28, 2016November 29, 2016

We both slept so soundly last night. I jumped up at shift change, hopeful, while Benji caught the last of his twelve hours. Benji’s labs showed a doubling of white… Continue Reading Day 697/69

Categories: Uncategorized Tags: acute lymphoblastic leukemia, CAR-T, CMMRD, immunotherapy, inotuzumab, PD-1, relapse, school, sleep13 Comments

Day 696/68

Laura Gilkey on November 27, 2016November 27, 2016

Benji slept a lot better last night. We both did. He woke up for the day and coughed for quite some time, but cleared his lungs and moved on. He… Continue Reading Day 696/68

Categories: Uncategorized Tags: absolute neutrophil count (ANC), acute lymphoblastic leukemia, blood transfusion, clinical trials, CMMRD, family, immunotherapy, platelets, relapse, research, spleen, x-ray11 Comments

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