Day 748/120


Benjamin and I woke up during the morning blood draw. It was still dark. Our nurse had to do a cap change on Benjamin’s IV line because he got transfusions yesterday. The process is slightly more invasive than a normal draw; we both have to wear hats and masks, and we are a little out of the practice of sleeping through these things.

I’d hoped that everything would magically be better today. I wanted the chemo to work immediately and Benjamin’s spleen to be dramatically reduced. Of course I know this isn’t the way things work. Benji was in pain. He took his first of so many baths today after the morning blood draw, and it gave him enough relief to sleep for a few more hours.

The lab numbers showed a reduction in white cells to 29,000, and an increase in platelets and hemoglobin with yesterday’s transfusions. This was definitely a step in the right direction, but probably reflects the increase in Benjamin’s hydration more than the efficacy of yesterday’s medicine. Another platelet transfusion was ordered for this morning to be absolutely sure Benjamin’s lumbar puncture would be done safely, and with as little bleeding as possible.

When Benjamin woke up for the day he felt a little better. Some of his spiciness had returned. I was so happy to see him in a more comfortable state. I gathered my questions for the morning rounds crew, who walked in just before Michael did this morning. Many of my questions required a consult with Dr. Oshrine. I didn’t expect a visit from him, but I needed confirmation that everyone was on the same page, especially about the risks of today’s lumbar puncture vs. the benefits. It was satisfying to learn that the recommendation was solid to move forward.

Benjamin’s lumbar puncture was scheduled for later than usual in the afternoon today to allow time for his platelet transfusion. As a result, he was able to get in a sweet visit from the music therapist plus both doses of intravenous chemotherapy before we went down to surgery. The Etoposide was hung around 11:30am, and by then, Benji was starting to feel significant pain again. He spent a lot of time in the tub, which is where he was when our nurses came in to hang his chemo. They didn’t miss a beat. They gowned up, checked the appropriate numbers, and dialed up the IV pump skillfully and acrobatically in the tiny bathroom.

The second chemo, Cyclophosphamide, was hung immediately after the first. While it finished dripping, the surgical transfer team called our nurse to let them know they were on their way to collect Benjamin for his lumbar puncture. Before we went down, Benjamin had an episode of diarrhea that made me run out into the hall to get a collection basin. I wanted to be sure he wasn’t experiencing a return of C. diff. We collected a sample and got him ready to go.

Benjamin’s pain was getting sharper as the afternoon went on. He was crying in pre-op, begging to take a bath. His was the last procedure of the day, and we had the entire unit to ourselves. I knew this meant we wouldn’t have to wait long, thankfully. He was scared. He felt nauseous and was afraid the propofol would make him vomit in his sleep. I reminded him that he has never vomited before with anesthesia. “But I’ve never felt this bad before either,” he said.

Michael kissed Benjamin goodbye and I walked with him into the operating room. The anesthesia team asked him to lie on his left side for the procedure, as he has done so many times before; but this time his spleen brought him to tears. The propofol worked very quickly. I kissed his sweet head when I saw the telltale yawn. I turned my attention to Dr. Wishnew, who was doing the procedure today. I’ve never asked about the timing of the results before. Benjamin has always been negative for leukemia in the spinal fluid. I truly believe he is negative now. Dr. Wishnew said that tomorrow morning we should know for certain. I thanked her, took one more look at the rise and fall of Benjamin’s chest, and left.

We asked the post-op team to take Benjamin directly back to his room for recovery this time. Michael and I went to the cafeteria to grab lunch, and went back up to 7 South to wait.  We had some time to fall apart a little. Thankfully, the dark places in our minds are quite different. We each hold light where the other can find it.

Benjamin was opening his eyes as he was wheeled back into his room on the seventh floor. He wasn’t groggy at all, but he was hurting badly. He asked for a bath almost immediately. For the next couple of hours he went from the bath to the bed and back again. He was in pain more than he was comfortable and he vomited three times. Finally, after much negotiation, he agreed to oral morphine. He’d been afraid that taking the pill would make him vomit again, but he kept it down.

We learned that Benjamin was negative for C. diff when he was in the one of his baths. The smile of relief on his face was beautiful. He was so worried he’d have to take those antibiotics again. Not so, and it’s a big blessing. This relief, coupled with the efficacy of the morphine, finally took away the sharp edge of his ubiquitous pain. He was able to relax, and he is sleeping so peacefully now.

Tomorrow Benji will receive his third and final doses of Etoposide and Cyclophosphamide. Tomorrow we hope to see lab numbers heading in the right direction, and to learn that Benjamin’s central nervous system continues to be free of leukemia. Tomorrow we hope for many more moments of comfort than pain for our boy. We are so grateful for the continued support of our amazing family and friends.

14 thoughts on “Day 748/120

  1. People wait a lifetime to share the love you have in your hearts
    for each other…….. so grateful for that.
    Prayers for healing and relief from pain.
    Love to my brace family……
    I Believe…..❤

  2. Prayers for so many things: pain relief, improving numbers, the continued emergence of a path, peace for you and Mike, and always, Benji’s healing.

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