Did this really happen?!

On November 17, 2018 by Michelle Love

I wrote this 3 years ago today. Seems so surreal.

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While not mentally alert, BJ realizes it, and it upsets him. He can take the physical pain, but when it extends to his mind, that just reaches too far. What breaks my heart is when he looks at me through tears and reaches out his arms to me like he did when he was little….wanting me to hug him, and hold him. I do, and reassure him that this will only last a little while. He looks into my eyes, searching for anything hiding there, seeing I believe it too. Those big blue tragic eyes…tired from pain and worry and being stronger than he should on this roller coaster life. And when he falls asleep again, it’s safe for me to temporarily crumble into a weeping mess.

#BJStrong

Post from November 17, 2015…

BJ is still cooking. His temp goes up and down all day and night, still reaching 104, and down to 100. His white blood cell count fluctuates between blood draws at midnight and noon. His WBC count at midnight last night was 60k, and at noon today it was 42k. We want to see that number continue to come down. His blast percentage is at 96%, which gives us a further degree of anxiety, but is not something his doctor is concerned about right now. His platelet count took a dive from midnight to noon, going from 41k to 28k. He just realized his gums were beginning to bleed again, so he’ll be getting a unit of platelets shortly. With the presence of bleeding, they won’t check the level, but will just order a unit, and he’ll get the transfusion.

Since Sunday night, BJ has had blurred and double vision, and seeing flashes of light. He had an MRI last night and there was nothing abnormal. Dr. Martin ordered a voriconazole trough level today, and it was high. It should be between 2-6. It was 10. A ‘trough’ is the level of the medication in the blood before the next dose is taken. Voriconazole is the anti-fungal medication BJ has taken since August when he contracted pneumonia from breathing in aspergillus fungus spores while immunocompromised. Dr. Martin discontinued his IV voriconazole until it’s back in the normal range. The high reading could be contributing to the vision problems, nausea and vomiting he has been experiencing the past couple days. He was also very lethargic, had some decreased mental status and slept most of the day yesterday. That seemed to be a little better today, but he is not yet entirely mentally alert.

Today, Dr. Martin decided to start BJ on TPN (total parenteral nutrition) and lipids, which is IV nutrition and fat. BJ hasn’t eaten anything in 2 days. It’s important for his new T-cells and for his body to have protein, calories and fat to be able to keep fighting. When he is able to eat, the TPN/lipids will be discontinued. His door was decorated today by Child Life. We opened the door up into the room so he could see it….he approved.