Day 733/105


We are still waiting.

Benji and I were up late last night. He is feeling so much better, and he wanted to make a round of his homemade soda for the night shift. I happily agreed. He lined up his orange pineapple creation around midnight and it was met with rave reviews. One of the nurses said he was “in his element,” and he was. He loves his nurses, and they love him right back.

Even with the late bedtime I had a hard time sleeping. I dreamed that the four of us were at a high school basketball game, and Dr. Oshrine was there. He pulled Michael and me behind the bleachers to look at a computer. The screen in my dream articulated my biggest fear. I barely slept at all. I woke up for the day at shift change, determined.

Benjamin’s morning labs showed a continuation of yesterday’s blast trend. The percentage of leukemia cells in his circulating blood is up to 40, and the total number of white cells is on the rise again as well. Strangely, his platelets rose a little, back up to 8,000. I’m grateful that things have been stable for as long as they have been. I don’t expect we’ll be able to wait too much longer before starting an interim treatment.

None of these numbers mean anything when I look at the boy in front of me. He felt great almost all day, with only a few moments of tummy pain. During morning rounds, our nurse practitioner told me that she’d texted Dr. Oshrine, and he hadn’t received an answer yet from CHOP. Benji and I passed the time constructively with a full day “back to school.” I was so proud of him. He dove right back in, getting lots of math work done and completing a super creative folk tale project.

Michael arrived as early as he could today, anticipating an important conversation with Dr. Oshrine. As the day shift came to a close, our nurse practitioner contacted him one more time. He replied that he had been in contact with CHOP and was waiting on a piece of information, something about a timeline. He would come and talk to us when he could paint the complete picture. Michael and I felt this could only be a positive sign.

It was nice that we could both be present today for Benjamin’s port access. During his hour of freedom from tubes, Benjamin took a nice long bath, and engaged in some (careful) wrestling–sweet, normal daddy time. When it was time for his reaccessing, Benjamin found his peace in good time. The needle punctured his skin and there was a moment of fear that there wouldn’t be blood return. But a simple adjustment from our expert nurse and everything was fine. Our boy was so brave. Always.

Benjamin ate a big dinner. He drank well all day. He moved his body, exercised his brain, and was in great spirits. In most ways he is completely himself. In other ways, I am reminded of the constitution of his blood, and the need for intervention soon. Tonight as his body sank into bed, he said he didn’t feel good, all over. Of course I want to go home. Benji really wants to go home. But if we need to stay here to help him heal, that’s where we’ll be. It doesn’t matter. Clematis Street, 7 South, or downtown Philadelphia. The ends of the earth. Anywhere.

12 thoughts on “Day 733/105

  1. Love to hear Benji’s feeling better and getting back to some peace.
    Thinking about you guys all the time… and praying for a Clear – Positive and Perfect path.
    Much love to you all.

  2. Loving the boy in front of you and Loving YOU. Grateful for these good days and looking forward for more to come.

  3. Anywhere. Always.

    I hope tomorrow brings your family one step closer to a longer term plan.

    Love, love, love to you!

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