Day 682/54

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Benji and I didn’t get much sleep last night. He had a platelet transfusion after midnight. Toward the end of it, he said he was feeling like he was getting mouth sores, and his throat felt funny. I called the nurse immediately. She brought her charge nurse with her. They turned on the lights and paused the platelets. We all sat together and watched Benjamin closely.

It’s possible to have an allergic reaction to any blood product. After 42 transfusions, we weren’t expecting one. Fortunately, the symptoms didn’t evolve. What Benjamin felt could have been a byproduct of the new chemotherapy. We resumed the platelets and monitored Benjamin until they finished dripping. We finally got to sleep sometime after 2am.

This morning’s labs didn’t show much of an increase from the transfusion. Benji’s platelet count was only 9,000; he’d need another boost. His white blood count held steady at 20,000 and his blasts were at 77%. I am so ready for that number to come down.

Benji and I woke up when Michael walked in with Sunday donuts and coffee. He snuggled right up next to Benjamin and spent the whole day with us. His presence fills the room with comfort.

The team decided to try a larger platelet transfusion this morning from a single donor, to see if the platelets would be better absorbed. It worked. For the first time in eight days, Benji’s platelet count was above 20,000.

It was clear very early today that Benjamin’s tummy pain wasn’t going anywhere. He kept pointing to his left side. It was different than his usual discomfort–more specific and more acute. I remembered from Benjamin’s original diagnosis that leukemia can enlarge the spleen. When Dr. Stapleton and our nurse practitioner came in for rounds, they felt his belly and confirmed that was the case.

An enlarged spleen in and of itself isn’t dangerous, but it is painful. It could be the medicine, but it could also mean the organ is overly burdened with leukemia cells. We have to be patient. We know this chemo can take a few days to do its job.

Benji was less than happy with me when I enforced a strict dental hygiene policy this morning. After he brushed his teeth he asked me to “take a walk.” Michael was here with him so I obliged. I was relieved to find my feelings weren’t hurt even a little bit. I absorb a lot of Benjamin’s frustrations and I can handle it. I went to the armchair at the end of the hall, sat in the sunlight, and fell asleep.

There was a blood drive and bone marrow donor registry in Sarasota today in Benjamin’s honor, organized by my amazing friend Maggie. I saw pictures of people from all corners of our life there giving blood to help replenish the many, many units Benji has needed. Altogether the drive collected blood from 82 people and added 42 new names to the bone marrow registry. It means so much to me that this happened; that we give as much or more than we take, and that a gathering of love and healing energy was focused on our boy.

After the blood drive, sweet family poured in and out of our room for the rest of the day. Benjamin’s chemo dripped during his visits and caused him no problems. His side continued to hurt, but he was distracted and happy. He didn’t eat dinner last night or breakfast this morning, but he had a couple of bites of sweets from the bake sale this afternoon, and by evening he was ready to try some creamy pasta.

We encouraged Benji to move his body today, but he was too uncomfortable. Finally he agreed to a wagon ride to the end of the hall to watch the supermoon rising. It was beautiful, but he was ready to come back to the room almost immediately. The pain had returned with intensity.

After the last of his visitors left, Benji took a nice warm bath, unhooked, for the first time in several days. It didn’t help much. We settled into a movie to take his mind off of the pain. It ebbed and flowed. Heat packs helped, and he’d cycled through a dozen of them or so throughout the day. He took Tylenol during our movie. It did nothing. Finally, unable to rest, he requested stronger pain medication. This is extremely rare for him.

Our nurse phoned the nurse practitioner on call, and they decided on a low dose of oral morphine. While we waited for the pharmacy to deliver the medicine, Benji tried to escape from the pain by closing his eyes and going to his peaceful place. He fell asleep. It is exactly what he needs. Our nurse brought the pill into the room and put it in her drawer. If he wakes up in the night from pain, he has relief waiting for him.

If Benjamin’s pain doesn’t subside tomorrow, he will probably have an ultrasound just to rule out anything unexpected. I’m hopeful for a lab report in the morning that shows the trends we’re looking for. As the Monday business hours unfold we will be having lots of conversations about the logistics of Philadelphia–when to fly, where to stay, which medical records to send. None of that matters unless Benjamin’s body is ready for this new treatment. That remains our paramount priority this week.

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