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Halfway through the blinatumomab treatment – Tuesday, February 2, 2016

On February 3, 2016 by



Tuesday, 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 has been profound. He aches all over. The medical team is watching his labs, and he gives a handwriting sample each day. If his handwriting changes, that will be the first sign of neurological effects, and the blinatumomab infusion could possibly be stopped, or delayed. While he is very weak, he is self-motivated, and still pushes himself to do what he can to help himself. The two things that he can work on are eating, and moving his muscles. Today, he has eaten a half cup of Cocoa Puffs, an avocado, and an almond butter/jelly sandwich with some fresh blueberries, and cauliflower with ranch dip.

BJ needed a blood transfusion today because his hemoglobin was 8.2. They had to do another type and cross, and it came back as ‘unable to determine a match’ for his blood type. This means that he has had so many blood transfusions over the past 3 1/2 years, that his blood type has changed. The blood bank determined by his labs and history that he could receive a transfusion of O+ blood.

Prayer warriors: Specific things to pray for are for the nausea to vanish, that he will want to eat, for his muscle strength to return, and for him to gain energy to be able to get up and walk again. Thank you for your prayers!

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I'm a mom with a heart split between my child on earth and my child in heaven.