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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

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Blog

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

Day 749/121

Laura Gilkey on January 19, 2017May 11, 2017

Today was like one long roller coaster. My stomach hasn’t quite recovered. Things are quiet and peaceful now, and Benjamin is soundly sleeping. For that I am grateful. We woke… Continue Reading Day 749/121

Categories: Uncategorized Tags: acute lymphoblastic leukemia, CAR-T, cerebral spinal fluid, intrathecal chemotherapy, lumbar punctures, methotrexate, morphine, pain, relapse, spleen17 Comments

Day 748/120

Laura Gilkey on January 18, 2017May 11, 2017

Benjamin and I woke up during the morning blood draw. It was still dark. Our nurse had to do a cap change on Benjamin’s IV line because he got transfusions… Continue Reading Day 748/120

Categories: Uncategorized Tags: acute lymphoblastic leukemia, cyclophosphamide, etoposide, intrathecal methotrexate, lumbar puncture, nausea, pain, spleen14 Comments

Day 747/119

Laura Gilkey on January 17, 2017January 18, 2017

We’re back on the seventh floor. It’s where we need to be right now. I’ve felt terrified, angry, guilty, relieved, and grateful today. Sitting here to write this feels exhausting,… Continue Reading Day 747/119

Categories: Uncategorized Tags: acute lymphoblastic leukemia, blood transfusion, cyclophosphamide, etoposide, kytril, lumbar puncture, marriage, platelets, relapse, siblings, spleen17 Comments

Day 746/118

Laura Gilkey on January 16, 2017May 17, 2017

This has been our longest stretch away from the hospital since October. It’s been sweet, nourishing, comforting, and necessary. And I am so ready for it to end. Benjamin needs… Continue Reading Day 746/118

Categories: Uncategorized Tags: acute lymphoblastic leukemia, family, intrathecal methotrexate, kytril, lumbar puncture, morphine, nausea, pain, relapse, siblings13 Comments

Day 745/117

Laura Gilkey on January 15, 2017May 17, 2017

The ebbing and flowing continues on this gorgeous Sunday. Benjamin needed no morphine, no Kytril, and no vomit basin today. These are all blessings. It’s also a blessing that I have… Continue Reading Day 745/117

Categories: Uncategorized Tags: acute lymphoblastic leukemia, family, relapse7 Comments

Day 744/116

Laura Gilkey on January 14, 2017May 17, 2017

Benji continued his pattern of ebbs and flows today. He took many baths, used his hot water bottle, napped and rested. He had one dose of morphine for pain and one… Continue Reading Day 744/116

Categories: Uncategorized Tags: acute lymphoblastic leukemia, platelets, relapse7 Comments

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