Day 662/34


We. Are. HOME. 

I hardly slept last night. I’m not sure why. Every creak of the door sounded more amplified, every beep more pronounced. I sat up to watch the screen at every blood pressure reading. I was unsettled.

It was my sleeplessness that found me awake when our sweet night nurse drew Benjamin’s labs at 4:45am. It was my sleeplessness that found me awake at shift change just a couple of hours later. I heard the nurses whispering. Our night nurse glanced over and saw my eyes open. She wasted no time, bless her: “Good morning, mom. His ANC is 330.”

I feel like I can accurately use the phrase sprang out of bed. Benjamin stayed asleep. I wanted to see those numbers for myself. 330 ANC, platelets at 54,000, rising hemoglobin, and no blasts. His creatinine went down a touch too, and his resting blood pressures were just fine. We were going home.

The morning nurse came back a few minutes later, once Benji was awake and privy to the good news. She gave him his morning medicine and told us she’d be back after rounds to deaccess him. “There’s no hurry. It will probably take you a couple of hours to pack up all this stuff!” she said. No way. Give me fifteen minutes. 

We did have to wait to see Dr. Mayer and go over Benjamin’s medications and the scheduling for the rest of the week. He will continue to take Dasatanib (which is insanely expensive as an outpatient prescription, by the way) until he is readmitted. Thursday morning we will return to the outpatient clinic for an appointment and a blood draw which will hopefully clear him for a bone marrow aspirate that afternoon. The results of the aspirate will dictate the rate of Benjamin’s Blinatumomab next week. I expect we will be readmitted next Tuesday or so.

With this information and a few papers to sign, we were free to go. Benji was deaccessed and four wagons were loaded. A medical technician we love helped us wheel our belongings down to my car, which was absolutely packed full by the time we were done. We hugged her and left, driving home with the music up and the windows down.

It couldn’t have been a more gorgeous day. It felt wonderful to pull into our driveway. Banyan had the day off from school today and Michael finished up his meetings early so that they could both be home to welcome us and help us unload. We went to a favorite spot and had lunch on the water and talked about our dreams for the week to come. Benji said he wanted to go fishing; Michael wasted no time and booked a fishing guide right then and there for tomorrow morning. We know we still need to be careful and protect Benjamin’s fragile immune system. But with only a handful of days at home together for the rest of this year, we intend to make them count.

After lunch, I collapsed on our bed. I slept like a rock for nearly three hours.

As the sun was setting the children of the neighborhood came out to play. The boys played football and ran and laughed like they’ve done so many nights before. I gave Benjamin his calcium and checked his vital signs tonight. His blood pressure is so much better than it was yesterday. I think we all feel a lot calmer now, being here, together, home.

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