Day 716/88


I didn’t want to look at this morning’s numbers. I tried so hard last night to focus on Benji’s slow and steadily declining leukemia blasts, but this morning I was afraid of what I would see. I listened to the whispers of shift change. I didn’t get up. I just asked, “Platelets today?” They said yes.

Benjamin woke up a few minutes later and immediately asked for a bath. He felt more solid walking to the bathroom than in days past. This was a good sign. I changed his sheets and poured bath salts and a kettle of hot water into his tub (it can never get hot enough). I busied myself around the room. When he was comfortably back in bed and the nurse came in with his morning medicine, I walked to the computer and took a deep breath.

Benji’s blasts have gone up. I knew it before I saw it, then immediately felt angry at myself for expecting it. It wasn’t a huge jump, but his white count rose too, so his total amount of leukemia cells is definitely higher than it was yesterday. It was hard not to sink way down.

So far, this means nothing. Benji’s final dose of Inotuzumab isn’t scheduled until Wednesday. Between now and then, we will watch his numbers closely. Dr. Oshrine will return next week and we will talk about whether to proceed with the dose. We saw Dr. Moore today (for all of a minute or two) and he said that at this point, nothing changes–the plan is to move forward as scheduled–but I took his words with a grain of salt. He has not been invested in Benjamin’s care, sadly. He was our primary diagnosing physician, but we haven’t seen him in over two months.

I imagine that Dr. Oshrine will recommend proceeding with the dose if the blast numbers stay stable or decline again. If they increase between now and Wednesday, my guess is we will look toward scheduling an earlier bone marrow aspirate, with the intention of enrolling in the CAR-T trial for the CD22 protein in Philadelphia. In Dr. Oshrine’s absence, this is all speculation. But I have no reason to rush a decision now without him. By Monday, things will start to come into clearer focus.

I emailed Dr. Tabori in Toronto to let him know what the morning labs showed. I told him my fear that Benjamin’s cells may have mutated again. I mentioned the PD1 inhibitor, asking if anyone would consider it if Benji was ineligible for the CAR-T trial, as the inhibitor is so untested in leukemia patients. He wrote back almost immediately, and said “If you decide to try immune checkpoint inhibitor we are happy to help and be involved.” I don’t know what that involvement would look like, but the email gave me hope that there may be yet another option out there, should we need it.

Benjamin received a platelet transfusion this morning, then took a short midday nap after his premedication for Vancomycin. Michael and Banyan arrived while Benji slept. They brought the lunch he requested, but when he woke up he wouldn’t eat. I was hopeful that Benji would move his body today. We encouraged him to walk out into the hall. Despite waves of feeling well, he wouldn’t leave his bed, except for baths. He also had waves of feeling really badly in his belly.

The parking garage here is being resurfaced, so Banyan and I took a quick excursion to move my car today. The weather was absolutely gorgeous. We threw the football back and forth for a while until we returned to the hospital. It was great to just be with him for a few minutes outside, doing what he wanted to do, happy. Walking back into the building was difficult. He put his arm around me as we went through the doors.

We gave Benjamin his second dose of Marinol for the day at around 5pm. I was hoping to make him feel better and increase his appetite in time for a visit from Kathy and Gana. They brought another gorgeous meal and treats. He picked a little bit, but didn’t eat very much at all. His mood was definitely enhanced, however, and he was happy and comfortable. He flirted with a fever, but he never reached the parameters that require a culture. This means he’s been fever-free for 48 hours, so tonight’s dose of Vancomycin was his last one. I’m so glad. One less thing to irritate his belly. After a long evening bath, he was ready to close his eyes, and he fell asleep shortly after everyone left for the night.

I’m planting myself firmly in the moment once again because the alternative is neither productive nor healthy. I’m grateful to have spent time with my family today. I’m grateful Banyan and I went outside. I’m grateful that Benjamin’s blasts are lower than they were when we started this medication. I’m grateful for blood donors. I’m grateful for Marinol. I’m grateful that we have ways to keep Benji comfortable and happy. I’m grateful he is sleeping peacefully now.

One day’s numbers do not make a trend. Tomorrow’s numbers may be more encouraging. It’s really hard to strike a balance between hope and reality, between optimism and pragmatism, between acceptance and belief. I felt so guilty this morning when I expected those numbers. I know that guilt has no place or relevance here. Our work is to advocate, to make the best decisions with the complex information we are given, and to love, above all else.

12 thoughts on “Day 716/88

  1. This whole thing, you are doing so well. You are such a resourceful and effective advocate with you medical team, and have helped Benji maintain understanding and so much power in his participation, and are keeping the love and happiness alive around him. It is amazing. There is so much big energy swirling around you. Trust yourself, feel, you have known what to do in each moment. And protect your abilities to sense, by doing things that keep you in touch with yourself. The path will reveal itself, and you will know what you need to do. I am in awe of you, in this process you are navigating. xxoo

  2. There is no shame in admitting frustration , anger, and even guilt. You can only ignore them so long until you have to acknowledge and deal with them which is more healthy than never dealing with them at all. However, they don’t have a chance in consuming you because there is SO MUCH love, strength, and gratitude inside of you. You and Benji are doing your absolute best with what you have been given and you have an amazing team guiding you. xoxo

  3. My heart, my prayers and my positive thoughts are with you and your family. Do not beat yourself up… your intuition eluded to his increase in his counts to prepare you but like you said… that does not make it a trend. Big hugs. Tmrw will be better.

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