Day 699/71


Benji and I slept soundly in our new bed, in our new room on the seventh floor. His labs were stable again this morning. His neutrophil and white blood cell counts continue to rise. His blasts remained the same, thankfully. Yesterday’s platelet transfusion completely disappeared. He received another bag full as soon as he woke up. He needs so many transfusions right now. I can’t say enough how thankful I am for blood donors. They are sustaining him.

We had a sweet morning, with Christmas music and Legos and knitting, and Benji was in a great mood. Aunt Sarah came to visit for the day and brought her bag of science fun. She and Benji got started right away. I was able to leave for long enough to renew my driver’s license and pick up lunch without worry. It was a beautiful day. I kept my windows down, even during an unexpected midday shower.

When I returned, Benjamin was “unhooked.” He is doing so well, clinically, that the team has decided to switch his daytime medications to their oral form and take him off fluids for as many hours as possible. This plan will be in place through the weekend. Then, on Monday, Benjamin will have surgery to place his apheresis catheter.

I was hopeful the procedure would be sooner than Monday. I am constantly fearful of a rise in blasts and what that might mean. But our nurse practitioner delivered the schedule with the blessing of everyone involved, from the surgeon to the blood bank to Dr. Oshrine. The longer I’ve had to digest it, the more I agree. Doing it Monday means we get the surgeon we want while our core team is all on the floor. It means the blood bank can earmark what Benjamin needs and communication will be much smoother. It means more time for Benji’s T-Cells to flourish and for the hospital’s IRB to approve what needs to be approved. Mainly, it means Benjamin will undergo a delicately organized procedure with a critical cell collection as we move into a work week, rather than a weekend. It will be worth the wait.

We enjoyed our afternoon. We took laps around the floor with Benji’s remote controlled truck. Sarah pulled out more fun science projects. We decorated with snowflakes. When Michael arrived, we even went downstairs and sat outside in the perfectly cool breeze. Benji enjoyed his daddy’s strong arms very much. He hardly complained a bit today. He said his heels hurt a couple of times, and mentioned some back pain once. His tummy hurt before he ate and after. But mostly, he was comfortable, happy, and having fun.

Tomorrow morning we will have our consultation with the surgeon to discuss Monday’s procedure. I’m relieved that it is the same surgeon who originally placed Benji’s trusty port. I think we will both have many questions. We also expect to see Dr. Oshrine tomorrow, who will help bring next week’s treatment plan into focus. Then we will enjoy our weekend. It will be a nice deep breath to begin the healing days of December.

8 thoughts on “Day 699/71

  1. Glad you all got some fresh air today.
    You are such capable people, in such capable hands.
    Supported by some amazing extended family….

Leave a Reply

Your email address will not be published. Required fields are marked *