Day 250

It was a stormy morning on the Ringling Bridge as I walked with my friend at sunrise. We avoided the rain, but the skies looked mysterious all around us. The clouds were inconsistent and quickly moving, yet there were patches of the most gorgeous bright color shining through. We are nearing the end of this stormiest of chapters, and to stand back and look at it all makes me feel awestruck, and a little shaky on my feet. I try to look toward those patches of color with excitement and possibility, but fear has a way of creeping in. I remind myself to return to the moment and give thanks for what is.

Benji woke up when I returned from the bridge, in immediate search of food. He didn’t need medicine though, and it was nothing like it was last night. He was excited to don his uniform and pack his backpack. We dropped Banyan off at the bus stop and I walked Benji to class. I told his teacher I’d be back before lunch to check him out early.

We saw one bald eagle in flight today on the way over the Skyway.

I put numbing cream on Benji’s legs in the Infusion Center waiting room. When we were answering our usual check-in questions, I told our nurse that Benji has been having more frequent tummy pain, usually just before sleeping and just after waking. We described his patterns and I told her these pains resulted in more clutching than nausea. I requested a consult with the oncologist on call today. It was Dr. Moore. I remembered in the shower this morning–my thinking place–that Erwinia has been linked to higher incidence of pancreatitis. I googled the symptoms and Benji didn’t fit the bill, but it was still worth examination. I wanted to see a blood chemistry.

After we discussed Benji’s symptoms with Dr. Moore, he agreed to check out his enzymes, the nurses accessed Benji and sent his blood off for the chemistry. We didn’t have to wait for the results in order for him to receive today’s Erwinia shots, and soon they were delivered from pharmacy. I wish that somehow I could capture the look of calm that falls over his face when he controls his mind and prepares for the needles. It makes me want to be a stronger person. I’ve held his hand through every shot, and I’m not letting go to film him. But it will live in my memory forever.

We took our laps and watched a movie while we waited for Benji’s hour of monitoring to pass. At the end of the hour, his results came back. His pancreas numbers looked fine, but his liver enzymes (ALT specifically) and chemical waste in the kidneys (creatinine) were elevated beyond my comfort level. Neither number was high enough to hold chemotherapy or provoke medical management. I’m hoping I can help them come down through intense hydration and extra milk thistle. I’ll be doing a little more research between now and Thursday (our next appointment) to see what others have had success with. It makes sense to me that as we near the end of frontline treatment, Benji’s organs should show some signs of “enough is enough.” Still, it’s unlikely these numbers are responsible for Benji’s tummy trouble. I think that’s just straight up chemo.

Benji slept on the back from All Children’s. He woke up when we stopped to pick up Banyan at the office, where the boys got into some serious rubber band antics. Their aunt Gana captured this shot and two mischievous expressions. They may bicker throughout the afternoons, but these two are always happy to be reunited again.

After dinner tonight, I met with another sweet friend at the Ringling Bridge to talk about a future photo shoot of our family. She was one of the craftswomen who contributed to our amazing quilt, and she’s a brilliant photographer. We haven’t talked in person since Benji’s diagnosis, and I realized as I heard myself speak that I don’t talk about these last 250 days very much at all. I write about them instead. It is much safer that way. It sounds awkward to hear my voice saying the words out loud; I sound distant, like I’m telling someone else’s story.

Michael texted me on the way home to tell me that Benji’s tummy was “burning.” He was in tears when I got home. Bedtime is often the hardest time of the days. We gave him Zantac, because he used the word “burning.” I lay next to him in his loft bed. It took a very long time for him to fall asleep. At first I was thinking of lunches I had to pack and this journal entry I wanted to write and how very tired I was. But with Benji’s head on my shoulder, and his fingers wrapping around mine, and Banyan’s deep breathing nearby, all of that melted away. Time is moving forward faster than I’ve ever felt it moving before. It is a privilege to lie still, breathing with my sleeping children.

I am so grateful for this space. In filling it, I return to gratitude, every single day.

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