Day 735/107


We are home. Everything feels pretty overwhelming right now. So many emotions today and so much uncertainty ahead. Home is the word and the feeling and the place I am grateful to return to.

When I saw Benjamin’s lab numbers this morning I wasn’t sure we’d be discharged. His white cell count and number of leukemia blasts took a big jump last night. Sixty percent of his circulating white blood cells are leukemic. Oddly, his platelets decided to increase as well, up to 13,000. At morning rounds there were no reservations about our homecoming, even with the rising leukemia population. We are still in our sweet grace period where treatment isn’t necessary, but we know this won’t last much longer.

The team said they’d like to collect one more blood sample before we went home. NIH wanted to verify that the CD22 protein is still present on Benjamin’s cells. The bone marrow aspirate results aren’t enough, because the marrow was collected under the influence of Inotuzumab. I was both grateful and scared by this development. We were in a very similar situation following Benjamin’s trial with Blinotumomab; his bone marrow aspirate showed the presence of CD19 on all leukemia cells, but by the time a peripheral sample was requested, the protein was gone. We need the CD22 to be present in order for Benjamin to proceed with this clinical trial. I have a good feeling about it, for whatever that’s worth. But it’s so hard to quiet the fear. The gratitude lies in the fact that the folks at NIH seem to be super responsive. Benjamin already has a medical records number there, and his blood is being shipped to their facility right now. Communication is so important. With these blasts on the rise, and Benjamin’s predisposition for mutation, we need a plan.

I think this is why today’s homecoming has been so emotional; the plan is so nebulous. We left the comforts of 7 South today with only a bag full of prescriptions and a clinic appointment on the horizon. We don’t know what treatment Benjamin will receive to keep his leukemia at bay, or when. As we were loading our wagons and saying goodbye to the nurses, someone in the hall asked if Benjamin was ringing the bell today. “Not yet,” I replied. My heart sank as I said it. I want him to ring that bell so badly. A monumental sequence of events must occur first. I’m grateful that I can see these events unfolding in my mind.

When the 10 mL of blood NIH needed was collected and sent to the lab, I signed Benjamin’s discharge papers, we hugged everyone in sight, and we were off. It was a gorgeous afternoon for a drive home. We picked up Benji’s favorite Sarasota lunch when we got into town, then settled back into our nest on Clematis Street. The dogs were so happy. Michael took the afternoon off and joined us, and we all picked Banyan up from school. I felt such joy seeing his face walking toward my car.

Kathy and Gana came over tonight to welcome us home, and to celebrate Kathy’s birthday over dinner at our place. We shared a table full of laughter. Benjamin felt great. He ate a big plate of fried rice. I was grateful for this; his tummy has been intermittently hurting him today and I have been concerned about the possible return of C. diff, but the hunger was a good sign. Also, as his leukemia population rises, I expect his spleen will become more enlarged, and his pain may increase. But right now, we can care for him here. Right now, he is happy, his belly is full, and he is home.

11 thoughts on “Day 735/107

  1. That photo tells me a lot….mainly how much Benji means to the 7th floor staff as well as they do to him…..very happy for the homecoming.

  2. So Happy y’all are together at home……
    Love and prayers for healing and your perfect
    I Believe……❤

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