Wednesday (Day 34 post CART cell infusion…20th day in the hospital)
On December 9, 2015 by Michelle LoveWednesday (Day 34 post CART cell infusion…20th day in the hospital) BJ was moved to Levine Children’s Hospital in Charlotte today. His white blood cell count was 115k this morning at Duke. By the time that we arrived at Levine, it had risen to 150k. He was started on steroids to decrease his WBC so Read More
I love you more than anything
On December 8, 2015 by Michelle LoveJust to document this moment…. BJ laying here, just called out “Mom”… I leaned over him and said “Yes baby?”… He said “I love you”. Read More
Monday (Day 32 post CART cell infusion…18th day in the hospital)
On December 7, 2015 by Michelle LoveMonday (Day 32 post CART cell infusion…18th day in the hospital) BJ didn’t sleep very well last night. He was awake off and on all night needing to re-position himself. Around 3am, his urine started to have visible blood in it, and by 8am, it looked like nothing but blood. His abdomen and back were Read More
Saturday, Dec 5, 2015 (Day 30 post CART cell infusion…16th day in the hospital)
On December 5, 2015 by Michelle LoveSaturday (Day 30 post CART cell infusion…16th day in the hospital) BJ had a better night back in the bone marrow unit. He woke up more mentally alert than I have seen him in days. He wrote “Remote” on his board, and after I gave him the TV remote, he put on ESPN. He seemed Read More
Friday, Dec 4, 2015 (Day 29 post CART cell infusion…7th day in PICU, 15th day in the hospital)
On December 5, 2015 by Michelle LoveFriday (Day 29 post CART cell infusion…7th day in PICU, 15th day in the hospital) In the recap of the previous day during this morning’s rounds, it was advised that BJ’s heart stopped beating for 8 seconds (instead of the 5 that was reported yesterday). They ordered an echocardiogram this morning, and it showed BJ’s Read More
What do you do
On December 5, 2015 by Michelle LoveWhat do you do … …when your son, with shaky, trembling hands, writes a question on his white board… Is everything ok? …when he looks deep into your eyes, knowing that you’re not telling the truth, so he writes… Are you sure? …when he reaches out both arms, as steady as he can, wanting your Read More
Thursday, Dec 3, 2015 (Day 28 post CART cell infusion…6th day in PICU, 14th day in the hospital)
On December 4, 2015 by Michelle LoveThursday (Day 28 post CART cell infusion…6th day in PICU, 14th day in the hospital) With all the awesome improvements yesterday in BJ’s respiratory function, having a bite to eat, and the decrease in his delirium, it was an unexpectedly rough day today. Results from BJ’s bone marrow biopsy showed blast cells, and blasts showed Read More
Tuesday, Dec 1, 2015 (Day 26 post CART cell infusion, 4th day in PICU, 12th day in the hospital)
On December 2, 2015 by Michelle LoveTuesday (Day 26 post CART cell infusion, 4th day in PICU, 12th day in the hospital) … The word from the doctors this morning during rounds is that overall, BJ is improving. (Big sigh of relief to hear that!!) It’s another long one, but if you read through to the end of this post, you’ll Read More
Monday, Nov 30, 2015 (Day 25 post CART cell infusion)
On November 30, 2015 by Michelle LoveMonday (Day 25 post CART cell infusion) …. Sorry for the delay in giving you a BJ update. Between total exhaustion, watching BJ constantly, and being away from my laptop, this is the first opportunity I’ve had to focus on writing. BJ was moved to the Pediatric ICU early Saturday morning for respiratory distress. His Read More
Friday, Nov 27, 2015 (Day 22 from CART cell infusion)
On November 28, 2015 by Michelle LoveFriday (Day 22 from CART cell infusion) … Two weeks inpatient at Duke. BJ was started on a small dose Risperdal to bring him out of the delirium, calm his breathing down from a respiratory rate of upper 50s, and slow his heart rate down from reaching 200 bpm. His oxygen saturation started dropping. He Read More
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