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March 5, 2011 – October 13, 2018

Written by Dyann Jackson

Kalieb was born on March 5, 2011. He was a healthy, bright, handsome boy. Kalieb had an infectious smile, such a comedian he enjoyed making people laugh. Kalieb loved music and dancing, he had the moves. He was on the basketball team, and the swimming team, He was a green belt in Karate. He loved to dress in costumes.

In the week before his diagnosis we noticed some slight clumsiness. The day of his diagnosis Kalieb attended a birthday party. He played and danced with the kids and we noted his balance had gotten slightly worse. We made plans to take him to the doctor that Monday, however that afternoon Kaliebs balance had become progressively worse, he was acting drowsy and disoriented. His left eye turned in toward his nose. He was taken to the ER and a CT scan showed a mass in the brain stem. He was taken by ambulance for an MRI. We got the diagnosis DIPG, inoperable. He was given less than nine months. We were transferred to MD Anderson. They did 6 weeks of radiation, chemo and steroids. This shrank the tumor and Kalieb seemed to return to himself other than weight gain.

In August 2017 he had some fluid develop in the brain and required a shunt. Kalieb started on a trial med called Vorinostat. This helped quite a bit. He did a second round of radiation for 2 weeks only, but in June 2018 he began to have balance issues. He lost the ability to walk, then to stand, and then the use of his right arm. In August 2018 he went under Hospice care and on October 13, 2018 Kalieb took his wings.

 

 

 

 

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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