Day 248

Banyan joined Benji and me this morning as we traveled to All Children’s Hospital. The parking garage was much roomier, and there was no hustle and bustle as we headed upstairs. The outpatient center was closed; the only patients in the building were in rooms with beds.

It was strangely comforting being back on the seventh floor today. We knew both of Benji’s nurses. We said hello to many familiar faces. What was most comforting was that we knew we’d only be there a few hours. No overnight bags, no Nespresso machine, no rainbow maker in the window.

There are different protocols on the 7th floor than there are in the clinic or the Infusion Center. When we were finished going over the orders today, the nurses said we’d just need to wait for Benji’s Erwinia to come up from pharmacy. I said, “and he still needs to be accessed.” They looked like I was speaking another language. “Accessed? Why?” I explained that in the Infusion Center, they access Benji’s port to provide an instant point of rescue in case he has an allergic reaction. He’s had 26 rounds of Erwinia before today–52 shots altogether–and they’ve all been administered while he was accessed. I’ve heard of other kids who had reactions after dozens of shots had already been given.

The nurses checked with the oncologist on call. Since there was no complete blood count on Benji’s orders, she was okay with keeping 7th floor protocol. I was frantically texting Tracey, my Infusion Center nurse friend. She calmed me down, reminding me that the inpatient nurses are equipped to deal with emergency situations more quickly than the outpatient nurses. Benji’s numbers on Friday were strong. I agreed to the plan not to access, with the provision that the materials they’d need to access and rescue Benjamin be brought into the room first.

Of course, Benji’s 53rd and 54th shots didn’t cause an allergic reaction. They just caused him once again to practice his superhuman mind control. I was glad Banyan was there to see it, and to keep him entertained in the hour that followed. They took laps together, laughing through the halls.

We came home late in the afternoon, and had a quiet, rainy, sleepy day at home. We were all wiped after yesterday’s big game. Benji’s tummy started feeling tender when we left the hospital, and I gave him Kytril. Later, I ran to the store to get a few things, and Michael called me; Benji was crying in the background, asking for more Kytril. I told him it was too soon. He asked for something to make his tummy feel better. We gave him Marinol, a detox bath and a movie. It worked. He’s sleeping soundly now.

Erwinia doesn’t typically make Benji as nauseous as other medicines, but lately he has been more and more tender after shots. I think it’s a cumulative effect. He has just 18 shots left to go–9 rounds. We’ll be so glad when they’re behind us.

I’m thankful for one more day in this long weekend to prepare for the week ahead. Benji will have three days of treatment in the short week. We’ll be ready.

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