We’re sleeping here on the 7th floor for at least one more night, and maybe more. Benjamin’s absolute neutrophil count (ANC) dropped down again, to 94. I knew it as soon as the nurses walked into the room for shift change this morning. No thumbs up, no knowing smile. All business.
When the nurses left, I opened the blinds, and said goodbye to my disappointment. I was determined not to let it permeate our little blue room. What’s the point? Whether we’re here another hour or another week, we may as well make the best of it. I thank last night’s sleep for the ease with which my attitude shifted.
As soon as Benjamin woke up he asked about his counts. He was disappointed, but also seemed to choose happiness easily and quickly. Somehow, it’s taken me seven days to remember the power of music upon our mood. It was a game changer. We got some schoolwork finished early and took the rest of the morning off to have a dance party, play baseball, and be silly. We had an absolutely lovely morning.
Michael came to be with us around lunchtime. He brought reinforcements for me and gifts for Benjamin that had been delivered throughout the week. In one of the packages was a gorgeous stuffed lion. It came at the perfect time, just before the nurse came in to numb Benji’s legs for his Erwinia shots. We told him lions were known for being brave, like him. Benji named his lion “Bravery.”
Benjamin was amazing during his second round of shots. Once again, he advocated for himself, asking me to speak to the nurses about the depth of the needles. He said that last time it felt like they “hit his bones.” While I knew this was physically impossible, I wanted to validate his feelings and his voice. The nurses explained that the needle isn’t long enough to hit his bones, but deep enough to permeate his muscle, and make him sore. They said they’d choose a slightly different spot each time and make sure his skin was numb enough to minimize the pain. He was so brave. He said it didn’t hurt a bit when the needles went in, but his eyes grew wide as they deepened. No tears. Just a serious champ.
We were in the clear again today, with Benjamin showing no allergic reaction to the Erwinia. Benjamin was monitored for a few minutes to make sure his oxygen, blood pressure and heart rate remained steady, then he was unhooked, even from IV fluid and antibiotics. He was a free man the entire afternoon (within the confines of our room).
So now, we wait for his counts to go up, and enjoy the relative ease of this stay. Assuming we go home this weekend, we will have eighteen outpatient clinic trips over the next five weeks. At minimum, the last two weeks of these will find Benjamin’s immunity severely compromised again. This is the crux of the Consolidation Phase. Strengthening.
While Noni was here for dinner and a visit tonight, I worked a little bit on our schedule, and a home plan for periods of neutropenia. I’m relying heavily on the moms’ group I’ve joined for their experience. Some families wash toothbrushes in the dishwasher and wear masks at grocery stores and have separate bathrooms for their “ck’s” (cancer kids). Others just use disinfecting wipes on doorknobs and surfaces. Everyone has their scale of comfort; some don’t let anyone in their home during all of frontline treatment (the first eight months or so), while others insist on as normal an existence as possible. Most that have siblings who go to school have them change clothes and scrub down upon entering.
Ultimately, as with everything, Michael and I will find the balance that works best for our family. I’m so grateful to others who share their experience.
Our night nurse tonight is Marilyn, one of the first night nurses we had here on the 7th floor after Benjamin was diagnosed. She’s kind, old school, and a good sport. She’ll be drawing Benjamin’s blood at 4am, the composition of which will determine the course of our weekend. May her hands be gentle and her timing be divinely guided.
4 thoughts on “Day 57”
Here’s hoping you get to go home. Benji you are so brave.
Laura: The picture of Bravery kissing Benji is gorgeous, as is Benji’s blond hair.
Would it make sense for you to have a place and move to St. Pete for a while?
We love you guys!