Day 708/80


There were a lot of positive things about today that I’d like to focus on. Right now I’m finding it difficult. I’m grateful for this space in which to sort it out. Benjamin is sleeping soundly now, but only after experiencing intense pain in his spleen tonight that required morphine. It hasn’t caused him this much pain since the day before his ultrasound nearly a month ago.

The pain started at the end of the day. Our morning was a sweet one following a very good night’s sleep for both of us. Benji left the bed and was on the couch early, which I took as a good sign. He had some pain at his catheter site and some tummy discomfort, but his spirits were high and he was happy. We did some math work, creative projects, and had fun with one of our favorite nurses. We shared a peanut butter and jelly sandwich at lunchtime.

Benji’s lab numbers are continuing yesterday’s trend–a significantly lower white blood cell count and the same leukemia blast percentage. Even though I know this means a lower absolute number of leukemia cells, I wanted to see that percentage number down, badly. His platelets practically disappeared again, but for the first time in many days, he didn’t need a transfusion.

The morning’s activity made Benji’s body tired, and he climbed back into bed for the afternoon. He didn’t sleep. He just wanted to relax. I played Christmas music, did yoga, and tried to quiet my mind. I just kept thinking that the Inotuzumab should be working better than this by now. I was paralyzed by the thought that maybe his cells have morphed again. Maybe they are no longer CD22 positive. Then what? It does zero good to entertain these thoughts. We are on a path, and it is way too soon to seek a different one.

Aunt Sarah came to visit this afternoon and brought some fun projects with her, which Benjamin enjoyed thoroughly. His pain started to increase, but not in his spleen; his leg was hurting from his catheter site to his knee, and his belly was very tender. He asked for a bath. He’s so introspective while the water washes over him. He’s been asking more about home lately, and when we might be able to go there. I answer him honestly. I have absolutely no idea. But it will be so sweet when we do.

Michael and Banyan came up after work, and Michael brought with him a miniature Christmas tree. It’s artificial and battery powered but it’s beautiful. He bought a box of tiny ornaments. All four of us decorated it together, and I love it.

Benji’s abdominal pain increased as the sun went down. He took a second bath, and we agreed on Marinol for relief. We gave it to him at exactly the same time as last night. I was optimistic that it would provide the same level of comfort. It increased his appetite, and he was able to eat some dinner, but it did nothing for his pain. Then everything seemed to shift into his spleen.

The pain ebbed and flowed but grew in intensity with each wave, almost as if the organ was contracting. Benjamin asked for heat pack after heat pack. He associates morphine with nausea, but he finally agreed to an intravenous dose, provided the nurse administered it slowly. I was grateful. It allowed him to fall asleep. He is still sleeping now.

I still hold hope that the Inotuzumab is targeting the leukemia cells and killing them and they are just being trapped in the spleen. I have no other explanation; even though Benji’s blast percentage is the same, the overall number of leukemia cells in his body is much lower than it was a few days ago. This increase in pain makes no sense, unless more cells have become trapped inside. But I don’t know enough about the lymphatic system or anatomy in general to understand. I just want him to stop hurting, and those cells to leave his body, permanently.

So, a return to gratitude. I am grateful that Benjamin didn’t need platelets today. I am grateful that he has fewer leukemia cells in his body than he did yesterday. I am grateful that he can take a bath again. I am grateful for ways to help relieve his pain. I am grateful that even though we are missing the smell of a fresh Christmas tree and the hanging of our favorite ornaments, we can bring Christmas to 7 South, and make it special. Above all else, I am grateful for love, which fills this room in vast abundance.

8 thoughts on “Day 708/80

  1. Prayers….
    Hoping the day is filled with all of your wishes…….
    and pain can not find that room today……..
    Deep Love ….
    I Believe….❤️

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