Day 675/47


Benjamin’s labs this morning showed a huge increase in leukemia blasts. More than double, up to 52%. We haven’t seen a peripheral number that high since diagnosis. His platelets dropped in half also, down to 9,000.

I couldn’t believe what I was groggily seeing on the screen while Benji slept. After the nurses left I went to the bathroom and emptied the contents of my stomach.

I knew Dr. Oshrine was on the floor today. I tracked him down and asked him to please stop by before he left for the morning. He nodded and I knew he’d seen the numbers.

Before today, the plan was for Michael to stay with Benji this afternoon so I could accompany Banyan to a chess tournament. We were both looking forward to it very much. We miss each other badly. But with this morning’s information I didn’t feel like I could leave. Banyan decided to skip the tournament and stay with us. I hope to make it up to him very soon. He handled a myriad of emotions today with such grace and sensitivity. There is so much good in that boy’s heart.

So, Michael and Banyan brought their Sunday donuts for the nurses and stayed with us all day long. The boys played video games and laughed loudly. Benji got a platelet transfusion. Dr. Oshrine came by.

Dr. Oshrine didn’t say don’t be discouraged as he has said so many times before. He said that he was not expecting this. Dr. Wishnew is the attending doctor on the floor this weekend, and she called the pathologist who looked at Benji’s labs this morning, just to double check that it wasn’t a mistake. It wasn’t, of course.

When Benji started Blinatumomab, it was at a low dose, to ameliorate the potential for cytokine release. His protocol dictates his dose titrates up to the normal rate early Wednesday morning. This plan remains the same. We have to hold hope that the higher dose engages his T-cells more effectively, whether that comes with cytokine release or not. Depending on tomorrow’s labs, I may push for an earlier titration. I need to see some urgency here.

Dr. Oshrine is calling his colleagues at the Children’s Hospital of Philadelphia. That center has much more experience with Blinatumomab and can tell him if they’ve seen this pattern before. They are also one of the two centers in the country that comes most highly recommended for CAR-T Cell therapy, which may come into the conversation if this morning’s trends continue after the Blinatumomab is at its maximum dose.

I excused myself to the bathroom for the second time while Dr. Oshrine was still talking. I waited until I heard him leave to come out.

Banyan and I did get to spend a few minutes together enjoying the gorgeous afternoon while we picked up lunch. I hugged him a lot. We walked with our arms around each other.

Benji had to have another dose of lasix this afternoon. His bladder continues to be  stubborn and I don’t know why. But his kidney function and all of his other functions are just fine. He functions just fine. He is happy and spicy and feels strong in his body. Yet half of his blood, which implies nearly all of his marrow, is leukemic. It does not make any sense.

I will seek more answers, and more of a plan, tomorrow. I believe that this therapy can still work. But for so long, I have maintained an impenetrable wall of hope around my heart, and today I felt the first real, structural crack. It hurts so bad. I am envisioning it filled with gold, like a piece of kintsugi pottery, patched with new hope.

12 thoughts on “Day 675/47

  1. It doesn\’t make any sense.
    Sending positive thoughts, prayers for strength and restored hope to all of you.

  2. I love you Laura and am sending ALL my love, my hopes, my prayers and my deepest, strongest, most sacred healing intentions to you all. xoxo

  3. My Thought and Prayers, as always, are with all of you. I know things look bleak but please keep your hopes up. As you know there is no medical reason why I am here… the Good Lord was just not ready for me. I was told at the very beginning to get my affairs in order and that was 19 years ago. Just know that y’all are loved by many and they are all praying and cheering for you ! Love You, Aunt Donna

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