Final hours of Blinatumomab – Tuesday, February 16, 2016
On February 17, 2016 by Michelle LoveTuesday, February 16, 2016…87 days in the hospital. Final hours left on blinatumomab treatment Tomorrow morning around 10am, the bag of blinatumomab will be taken down. BJ has been on this treatment for 28 days. A full cycle of blinatumomab is 35 days…28 on the treatment, and 7 days rest. He is scheduled for a Read More
4 days left on blinatumomab treatment – Friday, February 12, 2016
On February 13, 2016 by Michelle LoveFriday, February 12, 2016…83 days in the hospital. 4 days left on blinatumomab treatment Days just keep melting together. On Wednesday, BJ was awake most of the day but was struggling with severe joint pain and fever off and on all day. Thursday, he slept most of the day, but woke up enough for physical Read More
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
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