Day 657/29


Neither of us slept very well last night. Benjamin needed platelets to prepare him for today’s lumbar puncture, so our room filled with nurses at 3am, and at fifteen minute intervals thereafter. Morning labs were drawn at 6, and the results showed that his platelets had jumped to 28,000–just shy of the 30,000 necessary for the procedure. The team wanted him to have another dose. So we started our day with transfusion #33.

Benjamin’s tummy hurt so badly this morning that he went back to sleep almost as soon as he’d woken up. He said he didn’t think it could hurt any more than it did. During rounds, Dr. Wishnew felt his belly; everything was nice and soft, nothing raised any red flags. He couldn’t eat this morning because of the lumbar puncture, so we hoped it was just hunger. But I wasn’t sure. It felt different to me.

While Benji slept, Vinny Lacavalier came to visit the kids on the floor. He was the captain of the Tampa Bay Lightning for many years and arguably the best player to ever wear a Bolts’ jersey. Benji woke up as the hockey great was leaving the hospital. I asked him if he wanted to meet Vinny, and he said, “No thanks. I want to see my daddy.”

Michael arrived just moments before Benjamin was called back to the Special Procedures Unit operating room. Benji was so happy to see him. His tummy was still hurting, but not nearly as badly. Michael kissed him goodbye and I walked him into the room, and stayed with him for the twenty-third time while the milky propofol put him to sleep. I kissed his forehead three times, thanked Dr. Wishnew and left with a lump in my throat.

We gathered Benji’s requested snacks and waited for our buzzer to signal us back to the recovery room. We didn’t have to wait long, and Benji was awake when we got to his bedside. Since he was staying accessed we were wheeled right out and escorted back up to the seventh floor.¬†Michael brought two new Lego sets with him that Benjamin ordered and paid for with his research study earnings. We got Benji settled, the two of them started building, and I took a glorious nap followed by a glorious shower. We had a restorative afternoon.

We learned that the second morning transfusion boosted Benji’s platelets all the way up to 83,000. At first I was a little annoyed that they transfused a second time, rather than accepted him in SPU at 28,000, but now I’m optimistic. This increase may mean one fewer outpatient visit for us for a transfusion during our “week off.” Benji’s ANC continues a slow climb, today up to 80. I am still hopeful for a weekend discharge.

Michael said goodbye at shift change and went home to be with Banyan. Benji took his nightly bath, and when he got out his tummy was hurting badly again. Pain was morphing into nausea. Our sweet night nurse brought him warm packs and cold, and we requested Kytril. It worked. Benji’s spirits lifted, his body calmed, and he peacefully fell asleep.

Now, we just wait for neutrophils to rise. When we are discharged we will be given a time to come back and check counts, with the expectation of moving forward with a bone marrow aspirate. It makes the days feel shorter up here, knowing that home is on the horizon.

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