Day 689/61


The sunrise was spectacular. Benji and I were awake, calmly lying in bed as our night nurse prepared to draw labs at 6am. I sleepily asked if she was going to do a cap change on his line. She said she hadn’t planned on it, then Benji reminded her that he got a blood transfusion yesterday. She thanked him, and called a partner to help her with the sterile procedure. She gave us our masks and hairnets. We rested while they cleaned his line and removed the cap, then attached the syringe and pulled back the “waste,” his blood they can’t test. A second syringe was attached for his morning labs. This is all so completely normal for us now, at sunrise.

Benji stayed asleep during shift change an hour later. I woke up to peek at the lab numbers. His white blood cell count dropped again to 680. His hemoglobin held after yesterday’s transfusion at 8.6. His platelets were lower than they’ve ever been, at 2,000. His absolute neutrophil count (ANC) is a profoundly neutropenic 50. And his blast percentage rose again, to 47%.

I took a deep breath. Benji’s new friend Ethan, an osteosarcoma patient who’s here on the floor, has a very sweet mama who gifted me a book of daily wisdom. Today’s message about commitment and risk came at the perfect time. “The moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision which no one could have dreamed would come their way.”

There just isn’t time for despair. It isn’t productive and we have big work to do. I renewed my commitment this morning to doing every possible thing within my power to help Benjamin along his path. I am trying not to have attachments to what that path might look like. I am fully aware that there is so much here well beyond my control. But that which I can control, I will. I started with an early Sunday email to Dr. Oshrine.

I was relieved to see the doctor walk into the room a couple of hours later. He reminded me once again that the absolute number of leukemia blasts remains the same. Still, he agreed the trend is a discouraging one. He also agreed that while it is unlikely, the timing of the Neupogen with the increase in blasts was too coincidental to rule out a connection. The medicine is not supposed to stimulate lymphoblastic leukemia cells, but Benjamin has become the exception to so many “supposed to’s.” So we are discontinuing the Neupogen tonight. Infection is still the enemy, even more so with this ANC, but Dr. Oshrine was encouraged by the fact that Benjamin’s body has been so resilient. We can resume the Neupogen if we need to and have antiobiotics at our disposal.

Dr. Oshrine said that the chemotherapy regimen Benji finished on Wednesday was not the strongest in his arsenal. He had intentionally started off slowly, knowing that Benji’s disease needs to be maintained for quite some time before the CAR-T cells can even be collected, let alone infused. Today’s numbers were not enough to warrant a change of direction. It is also still very much within the realm of possibility that Benji’s blasts could come down during the remainder of this nadir period, and that is our fervent hope. But a backup plan is being formed. Dr. Oshrine told me to “hang in there.” Usually when people say that I cringe. He said it with such sincerity it made me want to cry.

Benji’s spleen hurt pretty badly when he woke up. I believe the leukemia cells are causing as much if not more damage than the excess of platelets at this point. With Benji’s platelet count at 2,000, the team decided on a transfusion today. I was grateful for the decision. The whites of his eyes looked a little pink to me this morning. I know this can happen when platelets get extremely low. It could have been just sleepiness; I don’t know. But I was grateful for the platelets, and grateful for the donor. It was his 49th transfusion.

Michael and Banyan brought the Sunday donuts for the nurses and spent the day with us. The platelets finished while they were here, and Michael encouraged Benji to take a lap around the floor to circulate the new cells through his body and hopefully, successfully through his spleen. Our nurse drew blood half an hour after the infusion to test the level. Benji received a much more solid boost this time, from 2,000 up to 20,000. It was a very good sign. Even if the level goes back down by morning, the immediate increase helps dispel the refractory option. We’ll know for sure when the antibody testing comes back, hopefully tomorrow.

Sarah, Lilye and Lotus came to visit this afternoon. All four cousins had a lot of energy, and it was an absolutely gorgeous day, so we negotiated with the nursing staff and the doctor on the floor. They gave Benji clearance to go outside into the garden for a little while, unhooked from his fluids, provided he wear a filtration mask because his ANC is so low. He hated the mask, so we all wore one with him. It was perfect outside. Just right for football. It made me so happy to see the sun soaking into his skin.

Tomorrow is Monday. There is work to be done. It is a holiday week, so communication may be difficult, but I hope to have answers to many questions. Has Benji developed platelet refractoriness? Will we stay the course with this chemotherapy regimen? Do his leukemia cells still have the CD-19 protein? Will his fusion blood test come back from Ohio with any revelations? And–most importantly–when can we book our tickets to Philadelphia?

With so much uncertainty, I am grateful for the things that keep me grounded, the truths that keep me focused. Banyan is so full of joy and energy. Michael anchors all of us in strength and laughter. Benjamin is stronger than any lab number on a computer screen. There is such bright light within these humans I love. I am surrounded by it constantly.

9 thoughts on “Day 689/61

  1. ^
    What your daddy said.
    You guys are amazing,
    and we keep beaming love and strength your way
    to bolster your faith,
    knowing the road will rise to meet you

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