80 days inpatient – Tuesday, February 9, 2016
On February 10, 2016 by Michelle LoveTuesday, February 9, 2016…80 days in the hospital. 7 days left on blinatumomab treatment The past few days have been met with fevers, body aches, joint pain, and no appetite. BJ’s spirits have also suffered as a result. Yesterday took him over the edge of being overwhelmed when there was a major screw up with Read More
75 days inpatient – Thursday, February 4, 2016
On February 5, 2016 by Michelle LoveThursday, February 4, 2016…75 days in the hospital BJ has been extremely exhausted. That’s what this treatment does, so it’s expected. He definitely isn’t having the horrible side effects that this treatment is known to cause. Over the past couple weeks, his bilirubin has gone up and come back down. The concern was that it Read More
Halfway through the blinatumomab treatment – Tuesday, February 2, 2016
On February 3, 2016 by Michelle LoveTuesday, February 2, 2016…73 days in the hospital. Halfway through the blinatumomab treatment BJ has had ups and downs over the past 2 days. He has felt ‘ok’, which for the rest of us would undoubtedly be defined as ‘really crummy’; and within the hour he’s feeling ‘really bad’…inconceivable for most of us. The nausea Read More
First uncontrollable nose bleed – 71 days inpatient – Sunday, January 31, 2016
On February 1, 2016 by Michelle LoveSunday, January 31, 2016…71 days in the hospital Yesterday was a first for BJ, and he stayed true to his motto of Go Big or Go home. His platelet count was 3k yesterday morning, so the team decided to transfuse a unit of platelets. The majority of the day was normal. We watched a few Read More
Doing Good, Considering – Friday, January 29, 2016
On January 30, 2016 by Michelle LoveFriday, January 29, 2016…69 days in the hospital BJ’s doctors say he’s doing good, considering what this medication usually does to kids/adults. He has been tolerating the tripled dose, and the negative side effects are still fever and extreme fatigue. His platelet count wasn’t getting an increase with the transfusions, so they are just holding Read More
Canceled “Wish” trip – Wednesday, January 27, 2016
On January 28, 2016 by Michelle LoveWednesday, January 27, 2016…67 days in the hospital BJ was moved to the PICU this morning at 0630, and his increased (tripled) dose of blinatumomab began about 1030. He had pushed his oxygen off around 0330 this morning, and his sats didn’t decrease. The nasal cannula was left on the top of his head where Read More
68 days inpatient – Tuesday, January 26, 2016
On January 27, 2016 by Michelle LoveTuesday, January 26, 2016…68 days in the hospital I hope the blinatumomab is kicking leukemia’s butt as hard as it’s kicking BJ’s. Over the past few days, he has had fevers, feels achy all over, having joint pain, and just feels bad. He is on a liter of oxygen, and has had several blood and Read More
Systemic blood infection – Saturday, January 23, 2016
On January 24, 2016 by Michelle LoveSaturday, January 23, 2016…65 days in the hospital BJ was moved back to the 11th floor late yesterday afternoon. He has continued spiking fevers of up to 103.3 today. His blood cultures from both his port and PICC lines grew bacteria, so doctors conclude that he has systemic infection in his blood stream. He has Read More
64 days inpatient – Friday, January 22, 2016
On January 22, 2016 by Michelle LoveFriday, January 22, 2016…64 days in the hospital BJ has been feeling good since the continuous blinatumomab infusion began Wednesday. He was awakened every 2 hours Wednesday night for neuro checks and vitals, so he was very tired yesterday. Yesterday evening, he spiked a fever of 101.5. Blood was drawn from his port and from Read More
Day 1 of Blinatumomab treatment – Wednesday, January 20, 2016
On January 20, 2016 by Michelle LoveWednesday, January 20, 2016……62 days in the hospital…..Day 1 of Blinatumomab treatment Today is a big day. BJ was moved to the PICU room this morning. The new immunotherapy, blinatumomab, started about 11am. They will monitor him closely for the next few days for any side effects. The infusion is continuous and is running through Read More
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