Day 632/4


Benjamin slept deeply last night. For the first time since we’ve been here, I woke up a full hour before he did. I’d gotten in a yoga routine, two cups of coffee, and the nursing shift change before he opened his eyes.

Benji’s labs this morning were just where they should be. His white blood cell count is coming down. The leukemia blasts didn’t show up on the peripheral blood report, and I’m hoping that means there aren’t any. I’ll see what shows up in the morning. His platelets were right at 10,000; normally they wouldn’t have transfused, but with Erwinia shots on today’s schedule, we decided to give him a boost. It was his 24th transfusion.

We had a relaxing morning. I cut rainbow stars, Benji used his tablet, we played cards together. I could tell how tired he was. I coaxed him out of the room to walk a few laps and move energy through his body. He agreed, but was ready to be back in bed. The steroids are to blame.

The oncology team agreed to postpone Benji’s first Erwinia shots until his daddy got here today. Michael, Kathy and Gana went to Banyan’s football game this morning; Gana sent us pictures of some of Banyan’s more fabulous plays. Michael got Banyan situated with friends for the afternoon and then came up to be with us, arriving just before my mom did from Winter Park.

Our nurse (one of my favorites) came in to apply Benji’s numbing cream and dressing. Benjamin was nervous when she came back an hour later with a partner to inject the medicine, one in each leg. He was fighting tears. I whispered the words I’ve said so many times. You’re stronger than the pain. I reminded him of his Jedi mind trick. And just like he’s done thirty times before, he nailed it. Like a champ. It hurt, of course, and I hate so badly that he has to do this again. But he nailed it. The nurses said he was the best they’d ever seen.

We took our customary laps around the floor to help the medicine circulate through Benji’s body. We returned to the room for a low key afternoon and a lovely visit with my mom. Our nurse came in to give Benji his Allopurinol, and somehow, the subject of Broviacs came up. I hadn’t thought of it yet, but I realized that Benjamin will have one implanted prior to his bone marrow transplant.

A Broviac is a little catheter implanted just below the skin. It allows for transfusions and intravenous injections without needle access. Our nurse brought in a dummy that showed both a Broviac and a power port, like Benji has. For most of the time Benji will have his Broviac, we’ll be here at the hospital. But when we are home, I’ll be the one flushing Benji’s line, and using heparin to prevent clotting–no nurses.

We will manage like we’ve managed with everything else. It just made me realize how much I need to learn. Benjamin has gone through periods of profound neutropenia, but they’ve been temporary. He is going to be devoid of an immune system for weeks. On Monday, we are returning to a structured schedule here in our hospital room, so we can get caught up on schoolwork. I decided to start Monday on some dedicated research time as well.

My mom left around dinnertime, and Michael and I got Benji ready for bed. We fed him and bathed him and changed his sheets. His nurse brought in his medicine for the night, and he was asleep almost as soon as his head hit the pillow.

I’m aware that these may be among the easier days we will have over the coming months, shots notwithstanding. Benji is tired and hungry but feels good, overall. His immune system is strong. We can walk the halls. We are thankful for this time, and for the time we have to prepare for his next phase of healing.


2 thoughts on “Day 632/4

Leave a Reply

Your email address will not be published. Required fields are marked *