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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 719/91

Laura Gilkey on December 20, 2016December 21, 2016

Benji and I were up before shift change again. He was in great discomfort. He begged our night nurse not to draw morning labs–a daily procedure that has never bothered… Continue Reading Day 719/91

Categories: Uncategorized Tags: acute lymphoblastic leukemia, ativan, c. diff, inotuzumab, marinol, nausea, platelets, relapse, transfusion15 Comments

Day 718/90

Laura Gilkey on December 19, 2016December 22, 2016

Benjamin and I slept well last night and were both awake at shift change. His numbers are holding steady. Saturday’s increase may have been sample bias, I don’t know; but… Continue Reading Day 718/90

Categories: Uncategorized Tags: acute lymphoblastic leukemia, c. diff, diarrhea, inotuzumab, marinol, nausea, relapse11 Comments

Day 717/89

Laura Gilkey on December 18, 2016December 19, 2016

Today was a very good day. It didn’t start that way. We were up before 5am with Benjamin in great abdominal pain. He asked for heat packs and cold packs… Continue Reading Day 717/89

Categories: Uncategorized Tags: acute lymphoblastic leukemia, family, home, inotuzumab, marinol, nausea, relapse11 Comments

Day 716/88

Laura Gilkey on December 17, 2016

I didn’t want to look at this morning’s numbers. I tried so hard last night to focus on Benji’s slow and steadily declining leukemia blasts, but this morning I was… Continue Reading Day 716/88

Categories: Uncategorized Tags: acute lymphoblastic leukemia, antibiotics, CAR-T, family, inotuzumab, platelets, relapse, siblings12 Comments

Day 715/87

Laura Gilkey on December 16, 2016December 17, 2016

It’s 3:45am. Benjamin just vomited every bit of last night’s nourishment from his body. He has abdominal pain he can’t describe. I don’t know anymore if it’s a result of… Continue Reading Day 715/87

Categories: Uncategorized Tags: acute lymphoblastic leukemia, Blinatumomab, blood transfusion, inotuzumab, nausea, platelets, relapse, sleep, ultrasound13 Comments

Day 714/86

Laura Gilkey on December 15, 2016

Benjamin’s fever took a while to come down last night. He was burning up. When it finally came down we were able to catch a few hours of sleep. His… Continue Reading Day 714/86

Categories: Uncategorized Tags: acute lymphoblastic leukemia, antibiotics, bone marrow aspirate, fever, inotuzumab, marinol, nausea, platelets, relapse, transfusion12 Comments

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