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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 737/109

Laura Gilkey on January 7, 2017May 13, 2017

It sure was nice to make breakfast in my own kitchen this morning. Benjamin woke up feeling strong. He was hungry and ready for action. He was excited to eat, but… Continue Reading Day 737/109

Categories: Uncategorized Tags: acute lymphoblastic leukemia, CAR-T, CMMRD, home, PD-1, relapse, stomach pain10 Comments

Day 736/108

Laura Gilkey on January 6, 2017May 13, 2017

It was so good to be home today. Benjamin had a day of high highs and low lows. When he felt well, he was so happy. When he felt poorly,… Continue Reading Day 736/108

Categories: Uncategorized Tags: acute lymphoblastic leukemia, anger, blood, relapse, stomach pain9 Comments

Day 735/107

Laura Gilkey on January 5, 2017May 13, 2017

We are home. Everything feels pretty overwhelming right now. So many emotions today and so much uncertainty ahead. Home is the word and the feeling and the place I am… Continue Reading Day 735/107

Categories: Uncategorized Tags: acute lymphoblastic leukemia, blinotumomab, CAR-T, home, inotuzumab, platelets, relapse, siblings, spleen11 Comments

Day 734/106

Laura Gilkey on January 4, 2017May 13, 2017

We are still waiting for some critical information, but we also have some answers. A path is forming and it includes time at home. The biggest blessing that has come… Continue Reading Day 734/106

Categories: Uncategorized Tags: acute lymphoblastic leukemia, c. diff, CAR-T, clinical trial, hospital, nurses, platelets, relapse13 Comments

Day 733/105

Laura Gilkey on January 3, 2017May 13, 2017

We are still waiting. Benji and I were up late last night. He is feeling so much better, and he wanted to make a round of his homemade soda for… Continue Reading Day 733/105

Categories: Uncategorized Tags: acute lymphoblastic leukemia, platelets, port, relapse, school12 Comments

Day 732/104

Laura Gilkey on January 2, 2017May 13, 2017

Today was relatively quiet on 7 South. Benjamin and I both slept in and woke up feeling refreshed. His lab numbers were a little discouraging; his blast percentage was up… Continue Reading Day 732/104

Categories: Uncategorized Tags: acute lymphoblastic leukemia, appetite, platelets, relapse11 Comments

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